Update 4/28/05pm
Our meeting went very well and we could not be happier right now. A lot of credit has to be given to our Onc. God surely had a hand in allowing him to be on call when we transferred to Children's last year. First off, I don't think I could send the letter below to any other Onc and have them enter the room as pleasantly as ours did today. After a brief discussion about his take on what has happened to Samuel the past year, he relayed that he is still unable to say with certainty that Vincristine was the culprit. But in moving forward with what the treatment plan should be, he first gave us his recommendation, which was to proceed with the treatment using VIncristine at a half dose, Dex and Dox and adjusting as we go. BUT, he knew that would never go over and that telling us what we HAVE to do doesn't work. And his major concern in the grand scheme of things is that if we did go through with the above treatment and have more problems, that we would walk away from treatment forever. So, bearing that in mind, he was personally most worried about Doxorubicin than any of the other poisons and felt that using it alone was not worthwhile. The compromise he feels will work in our given situation is to skip the first month of DI, as I stated in the last part of my note. Go on to month two, which is what we already did back in November/December of last year, and then on to Long Term Maintenance. That just takes my breath away to type. Mostly because it means the weight of worry is off our shoulders and we are literally being able to fast forward our lives a bit. It is literally like someone just pushed the FF button and skipped a month that was dreaded. We basically have a few weeks of chemo and then can move on. Move on with our lives, get some normalcy back, and most importantly, get Samuel's intestines hooked back up again. Possibly as soon as June. Now that will be erally something to celebrate fur sure. Everyone is in agreement, everyone is happy with this plan. While I will never be thrilled with chemo, I feel as if the major problem poisons have been eliminated and that the feeling I got a few months ago, that this was our year of Restoration may actually come to pass. I am very happy tonight thinking that we might actually get done with this crap soon. I am thanking God that we got the best Onc of the bunch. The respect that I lost for him a few weeks ago has been earned back today. As we left today, we told him again, that we think he is a good doctor, and we are very glad to have him. Mark commented that he was unsure why anyone would want to go into the Oncology field, but that we were glad he did. He responded that he likes a challenge (referring to us) and that all the other fields were too boring. I am sure we are a pain because we don't do what we are told, but OTOH, had Samuel had the "normal" things happen during his treatment, we would not be quite as worried, defensive and questioning. At any rate, kuddos to our Onc for being able to handle us, or as Mark says, ME. I never have ever stated that I was NOT a PITA.
There are just certain days and events that seem like God has really made a move on our behalf and this is one of them. Our Onc is in agreement with us that Samuel has MORE than paid his dues. He feels it will be okay prognosis wise to skip the first month because Samuel has never showed signs of relapse.
I am sure that looking at three months of Samuel's suffering only helped to drive the point home. It was really eye-opening to us to reread the entries and very clear that Samuel had a major blockage the entire time. I told the Onc today, "I don't want to point fingers, lay blame, I just want to move on, have a life and never look back on that time." I can't change it, I hope that everyone who needed to learn from it did. We did.
As for the future, we will be back to the four day a week trips to Seattle starting next Wednesday. Samuel will be inpatient for the major chemo day, just overnight, and then we will have to go back for daily doses of Ara-C. So Wed through Sat we will be heading to Seattle. The following week the same. Then the next two weeks for counts to recover. Samuel's counts did not drop much the first month of this phase. Se while we might hibernate, it won't be to the degree or time we did it before. Mark asked the Onc if he could wait until the gas prices go down to start this phase. It will suck, but at least we can do it knowing the end is near. Once a month trips to the clinic sound great at this point. I am not impressed with staying a night at the lovely hospital again but am praising God it will be the last for chemo.
THe kids are so ready to do some activity. kaysha took the first half of the SAT's today. I told her to make some new friends that we can hopefully get to know better in the following months. Everyone is so ready to do something fun on a regular basis, my insides are ready to jump out with joy just thinking about them enjoying life daily, instead of in small incriments.
Our thanks to those who prayed for us today. Please join us in praising God tonight. Our prayer is that the next month be quick, go smoothly and that Samuel handle the poison in the same manner he has the past two months. In the past year, he has eigher amazed the doctors with his great health, or bewildered them with his many problems. I pray that the astonishment at his success continue. I pray that the joy I feel right now at the prospect of a normal life, whatever that will be because nothing will ever be the same, not be short lived. Much love!
Update 4/28/05am
Our meeting is today at 11:45am. Please pray about the outcome. Our letter to the ONc is below. He has hopefully seen this.
In prep for our meeting tomorrow, we thought you needed advance warning about our thoughts for the future treatment.
The case against Vincristine..........
I am sure the details of all that has happened to Samuel are fuzzy and thankfully I have kept a journal with very specific logs of all the issues we have had. I went back through these archives and tried to summarize. It is not short because the problems Samuel had spanned over three months. But with hindsight being 20/20, it is more than obvious that his issue with his anus and the stoma itself were as a direct result of Vincristine.
Prior to 11/15/04 we had no issues with the stoma other than once Samuel started walking we could not keep a bag on it longer than 24 hours. We had experienced small food blockages (blockage = very little ostomy output, lots of gas, lots of pain.) which were eliminated when we stopped feeding him cheese. These resolved easily within 24 hours with clear liquids. Any and all suspected blockages were treated the same. All solid food was stopped, and Samuel did a clear liquid diet NG only until the problem resolved. Then he was allowed to eat again.
11/15/04
Samuel woke up feeling poorly for the first time in months.
First full dose of Vincristine and L-Asp on the same day.
He screamed for 24 hours AFTER the Vincristine push. He stopped peeing, he stopped pooping and went from 15kg to 16kg in 24 hours. He required morphine, etc and still got no rest. He complained of a tummy ache, his knees hurt, his legs hurt, his stoma hurt. He immediately stopped eating PO.
11/16/04
12 hours of no ostomy output, no urine despite a night of full clear liquid feeds NG, 800cc's. Still complaining of stomach pain and he screamed all night despite narcotics. We called the clinic and were told to come in. By early afternoon, he started slowly peeing but it was toxic smelling and he complained that peeing hurt. An x-ray showed "no blockage". All other labs were within expectations. We were sent home told to "deal with the rough parts." By Dr. Thomson. Samuel did pee a good amount finally, before we left the clinic. Still no ostomy output of any measure.
11/17/05
Peeing well, but still very little ostomy output. What is coming out is a lot of air and thick black tar looking paste. Still complaining of tummy pain, stoma pain and leg pain. No amount of narcotics are touching this pain. He started picking the skin off his lips, a habit he adopted at Mary Bridge when in extreme pain. Still feeding clear liquids via NG
11/18/04
This is the day I discovered he was having "labor" similar pains. Contractions. This was the worst day yet and we called the clinic again and came in. This is now 72 hours of misery with no relief in sight. Everyone is exhausted from trying to comfort Samuel. His weight is down from 16kg two days before to 14.3kg. Everyone in the clinic notes Samuel looks terrible and YOU say that the Vincristine may still hang around a few more days. Nothing is done for Samuel. Still very little ostomy output, just gas and paste.
11/19/04
Finally we have some more normal looking poop. But no relief, in fact Samuel wakes up worse. Finally toward mid-afternoon, his "labor" ends with his anus opening up letting the mucus that has accumulated there for the last six months out. He finally gets some relief. But now he has an open raw wound and low WBC. He ran a fever that night. We were again seen by you in the clinic, nothing was done for Samuel.
11/20/04
Woke up happy but still complaining about his stomach, knees and stoma hurting, not to mention his butt. Still not tolerating solid foods via NG. Not eating PO, hasn't since 11/15.
11/21/04
SAA
11/22/04
Finally a little relief, not screaming every other minute, he is now screaming every 10-20 minutes or so. Now tolerating NG feeds 1/2 solid 1/2 clear.
11/24/04
9 days after Vincristine, finally feeling better. Pooping, peeing, but not eating PO at all.
11/26/04
Samuel is back on his regular NG diet and eating saltines.
11/28/04
Another improvement in Samuel's well being, even over the few days before. He is actually happy again. 13 days after Vincristine. Just in time for Cytoxin.
12/1/04
Started Consolidation month 2. Samuel seems fine now.
12/7/04
Samuel eats chips and gets an immediate blockage. Blockage = NO ostomy output, complaining of tummy aches, stoma pain, etc... We remove chips from his diet and start clear fluids.
12/10/04
Back to normal. Feeling better, normal diet.
12/14/04
1/2 dose of Vincristine. No negative side effects seen. We had a good week.
12/21/04
1/2 dose of Vincristine. Immediately, Samuel is complaining of cramps, his stoma hurting and he has limited output.
New major side effect noted. His stoma is now pulling in. Pulling in so much that we fear it might go under the skin. I contact the ostomy RN's to see if they think it is a surgical issue. They have no comment other than to say the surgeons won't revise the stoma unless it is really bad. They also say that the stoma CAN actually get lost under the skin. The skin is also breaking down around the stoma site due to the stoma pulling under the skin and breaking the bag seal. We are now going through 4 bag changes a day. He is also starting to throw up regularly. Did not notify the clinic because they have been previously unable to help the condition.
12/22/04
Samuel is back to being doubled over in pain. We are giving narcotics again. He is still throwing up. Changed him back to clear fluids.
12/23/04
Still cramping, stoma pulling in, very little output. Lots of gas, on a clear diet. Miserable.
12/26/04
Three more days of the same....
Stoma still acting up, we cannot find a reason for a true blockage, meaning it was nothing he ate because he is NOT eating. He is still miserable. It will seem to improve and then worsen again.
12/28/04
Samuel has been screaming all day. The skin is red raw and sore around his stoma. We gave up on bagging it and just let it air out all day and took turns wiping up the poop as it sprayed out. The stoma still pulls in and seems to be under "pressure" as it lets poop out. Lots of narcotics, nothing helps. Same old story. Still on clear diet. I e-mailed a pic of his stoma to the NP for general surgery but we still get NO help.
12/30/04
Samuel has improved. We try going back to a solid NG diet again.
1/1/05
Samuel started the new year at 4am stating his stoma hurt again. This signals to us, blockage.
1/2/05
Still complaining about his stoma. Back to clear liquids. Direct quote from my journal....VERY important because he obviously had the kink on the top at this point, and most likely before.
"Today he is still complaining about his air bag (stoma) hurting. And very little output again with lots of air. Not a good thing. There is some sort of blockage again, though it be not large, it is still causing him pain. His skin looks only marginally better today. I listened to his bowels tonight and there is very little sound coming from the top, and more on the bottom. Usually the whole thing is loud and going to town"
1/3/05
SAA, very little output. Very miserable Samuel.
1/4/05
Samuel woke up at 3am complaining his tummy hurt and eventually threw up. Later he wants to eat food. Seems to feel batter. Now the eat, get sick, throw up, cycle begins.
1/7/05
After another few miserable days, Samuel wakes up more like himself again, seems better.
1/10/05
Samuel is able to eat PO and seems okay again.
1/12/05
Started IM today.
1/13/05 Got his last L-Asp today.
Complaining that his stoma hurts again. Continuing to pull in and break down the skin.
1/15/05
Complaing about his stoma continues and he is now throwing up again. We made an appt to see our former GI in Tacoma for the following week.
1/16/05
Watery output from the stoma and is now puking regularly. We are concerned about dehydration at this point but I am still able to get clear fluids in. He is still complaining of pain, the stoma pulling in and pressure is getting worse. Our level of concern has been kicked up several notches at this point.
1/17/05
Still puking but then feeling somewhat better and demanding food. We let him eat because he is starving at this point and after several hours it results in puking and the cycle starts all over again. He has been on a clear liquid diet NG for about 3/4 of the last two months now. His weight is very reflective of this averaging 14kg.
1/18/05
Samuel was admitted due to his Creatnine being elevated. X-ray shows "no blockage." Still unable to properly feed him. The stoma is now under such pressure that it literally looks like a squirt gun when it poops. Note, we saw Dr. Guyer today and I had to demand that something be done about our situation and it was only the fact that the Creatnine was off that got us admitted. VERY frustrated.
1/19/05-1/22-05
Various procedures and scans are done to determine what the problem with Samuel's gut is. The general surgeons dilate the stoma which gives us temporary relief. However, they thought they would find a stricture at the site and did not. The lower GI barium study shows nothing remarkable. Samuel seems to finally have relief and we were released with orders not to feed him anything solid that was hard or crunchy. Samuel is happy, finally after two months of misery. There is talk of hooking his gut back up as the dilation of the stoma is only good for a few weeks tops. But nothing can be done because of a low WBC right now.
1/24/05
It is obvious that things are still not right or the stoma has closed up again. Samuel is experiencing all the signs of blockage again, despite NOT eating PO. He has went from 6pm the day before to 5pm today, 23 hours without peeing. Water is pouring out of the ostomy. I spent the day talking to the NP for General Surgery who said we would need to come to the ER if he did not pee soon. This despite pouring his NG full of clears.
1/25/05
The upper GI barium study is also unremarkable. They told us to let him eat to finish the study which ended up in a night full of vomit.
1/26/05
Still vomiting, stoma is back under pressure again, Samuel is miserable.
1/27/05
Samuel feels remarkably better today. We are not allowing him to eat PO at all and running only clear liquids.
1/31/05
We are inpatient again. NO stoma output. He is vomiting, and miserable. Needing MANY narcotics. We saw Dr. Mathews today who failed to tell the General Surgeons that Samuel is completely blocked. This results in a CT for the next day being put off and the surgeon being called out of the OR to get the real scope of the problem from me. Again, beyond frustration! You already know this.
2/1-2/8
It took this long to get a surgery time and figure out what the game plan actually was. In the mean time, there were several more days of suffering for Samuel resulting in an ileus. Our stay was further made worse by having incompetent RN's who might be fine for Oncology Patients, but were not fine for a patient with a surgical need. We got a float nurse, Inge, who was the saving grace of this week.
The stoma was revised and two kinks were found in his small intestine. One at the top, which would have been missed had we not wanted a G-Tube placed and one above the stoma site. He also had mild pancreatitis. The adhesions were plentiful and the entire small intestine was mobilized to free the adhesions.
It took another 7 days for Samuel to fully recover from this surgery and go home.
In our opinion, what happened to Samuel was a Grade 4 non-hematological adverse event as described by the NCI's Cancer Therapy Evaluation Program's Common Toxicity Criteria Model. This situation was life threatening and required surgical intervention that should have happened a lot sooner than it actually occurred. Every diagnostic tool available to us failed to diagnose the kinks that were obviously there at least as of the first of the year, if not beforehand, until the actually surgery. Further, the stoma did not begin pulling in and threatening to go under the surface of the skin until the second half dose of Vincristine. Both of these events occurred on the same day. It is obvious to us reading the journal, that Samuel's stoma issues were a direct result of Vincristine and not purely circumstantial. There will be no future use of this drug/poison to "check" as we clearly have our answer. Further, there seems to be no one at Children's who has enough experience with a case this complicated. The General Surgery Department has very little time to evaluate on an immediate need basis and only took us seriously AFTER opening Samuel up and seeing the massive extent of damage to his abdomen, gut, etc. Their NP's have no clue about chemo and stomas so don't comment much or get the appropriate help when needed. The Oncology Department does not understand the GI tract enough to know that there is a problem despite what the scans show. It would seem everyone was too busy to seek outside help from perhaps another doctor or hospital which has seen more/worse cases. We tried to do this but never made it to the appointment because we were inpatient by then. Not to mention that our resources are limited.
We have a stoma which works beautifully and since the revision have not had a single blockage, we intend to keep it this way. The risk of Vincristine is NOT WORTH the so called benefit. I hope that this is really clear because it seems to be a drug that you are very determined to continue use of. Samuel is unique, as are all of the Oncology kids. They should not be compared, such as one kid with a stoma to another. You yourself have mentioned that your other cases with some sort of resection have not had near the amount of issues as Samuel. The only other child who I know of that had a worse case of Typhlitis than Samuel, died in less than 8 days after hospitalization. Hardly comparable given the amount of problems Samuel has overcome.
Dexamethasone/DI and Doxorubicin
These drugs bring countless other issues to the table but I will deal with them together as you are proposing their use as noted on the Protocol which we have never followed thus far.
Back at our meeting with you, Dr. Thomson and Fred in October, we were led to believe that Samuel had so much trouble during Induction due to the protocol NOT being followed. Dr. Thomson stated that Samuel got "more than the protocol" which you currently use at Children's. The substitution of Dex vs. Pred was one thing. We both swear there was something stated about Samuel getting MORE DNM than the protocol as well. Now, however we are being told that other than the Dex/Pred issue, the protocol was followed. This conflict is a major problem in our mind. We only agreed to continue treatment in November because we were under the impression that Samuel's protocol was altered in such a way as to cause all the horrible events that happened last year.
So IF we actually did follow the protocol last year, and are looking at basically the same treatment plan for DI now, there is no way we will do it. It is absurd to believe that we can do that treatment again and expect a better outcome. Despite the fact that we have no more L-Asp or Vincristine, the Dex has been implicated in not one but every issue that Samuel had last year. These issues have now taken almost a full year to resolve. I have read countless studies, articles, etc documenting the toxicity of DNM and Dex. In fact the newest study protocol COG-AALL0232 clearly states the issues with Dex " Dexamethasone seems to work better but has serious (and potentially long-lasting) side effects, prednisone is less toxic. This study aims to find the optimum steroid dosage. " Samuel has had enough Dex. Mixing it at an even higher dose with Doxorubicin, a drug similar to DNM seems to be only asking for trouble with a child who has already had a SEVERE reaction to it in the past. This does not even take into consideration the massive list of side effect of Dex directly affecting the gut and more severely affecting someone who does not have a colon. Examples would be potassium loss, which for a person WITH a colon, would be trouble enough but without a colon, is a major concern. We already know what happens with a potassium deficiency based on the shunt surgery which had to be canceled in the OR. Dex was one of the drugs targeted by the GI at Mary Bridge for the continued issues with Samuel's GI tract for months after the resection. Then there is the neuro issue, which we don't ever want to go there again. Of course no one has every heard of all these complications happening on ONE single patient so we are in no rush to see what more can happen. Samuel has had enough Dex to last a lifetime, and with the condition of his gut being very fragile, this drug should not be used with Doxorubicin/DNM on Samuel ever. Obviously there are interactions here that are yet to be documented. At this point, any drug that specifically targets the gut and causes problems there is off limits.
That leaves us with Doxorubicin as a single agent, which might be okay barring that it does not have Vincristine to block it's elimination through the GI tract. In doing further research about the drugs used in Induction, it is obvious to us that it was the DNM that burned holes in Samuel's GI tract from top to bottom, including his anus, literally destroying that along with his colon. It was greatly helped by Vincristine affects on his gut along with Dex. Adding to that, the five different antibiotics including Vancomycin which has a little known side effect of ALSO destroying the gut, we were doomed. This is another time in Samuel's treatment/or demise as the case might be, that is not fully understood or given the consideration it deserves by Children's staff because you were the "clean up crew" as it were. You did not experience with us the one thing after the next after the next. Samuel has overcome a lot in the last 12 months and now a year later, we feel he is back to almost normal. He is a happy healthy little boy. And we have worked our butts off to get him to the place he is now, from a physical, emotional and nutritional standpoint
You mentioned reducing the doses of Dex if there was a lot of side effects, but the problem with that is that by the time we have seen side effects in the past, it was too late. Both times Samuel received Vincristine in the last 12 months resulted in surgical intervention to save his life. Both in May 04 and February 05.
In our consult with Dr. Labriola, he recommended that we get Samuel as much chemo as he can tolerate. Key being tolerate. I think that the reality of what he has been through and the fragility of his gut has been forgotten because he has done so well in the last two months since his last surgery. The fact remains that he reacts differently to the drugs coming up than other kids and we do not wish to revisit the life and death issues caused by them. It is not okay to dump all these toxins in and pray they won't kill him. Living at the hospital for three months like Samuel did, is NO quality of life. I would not wish it on my worst enemy. The physical problems caused by these drugs have put us in the place we are now and using them again is only asking for further damage, more surgery, or death. They don't guarantee a cure, it is not worth the risk. Which is the lesser of the two evils? Death from a relapse, or death from chemo toxicity? I guess if we have to choose, we will take the first option. At least then we know what to expect. Samuel has suffered enough toxicity of these drugs to last a lifetime. He has the right to body integrity, at least what parts that he has left and we won't steal that from him to "prolong" his life. Losing any more of his gut is sure death for him at this point, or a life in the hospital indefinitely. This is NO life. We are not selfish enough parents to save his life at all costs. We already watched the life drain out of him with a hydrocephalus. At that point he was not unlike Terry Shaivo. A vegetable in a bed kept alive by TPN and a feeding tube. Difference being that there was no detectable brain damage. Samuel deserves the best life we can give him, with his body intact, at home. Whether that life is a month, a year or until he dies as an old man. Understand that we are all about keeping Samuel alive and it is our hope that he have a long and prosperous life.
Please note that we are not saying NO to all treatment, only to Vincristine, Dexamethasone or any steroid use during DI Samuel may tolerate steroids fine during LTM. There have to be other options for children who are unable to tolerate these drugs. Or skip the first month of DI altogether.
You are a good doctor and we will be forever grateful to you and to other staff at Children's for fixing Samuel last year and getting us home. We overcame a tremendous mountain. You have stated on several occasions your nervousness about DI. If there was ever a time to proceed with caution, it is now. We have spent a great deal of time trying to decide what is in Samuel's best interests and a lot of hard decisions were made that we have both agreed to live with. A lot of time has been taken to get this letter organized for you and it is our hope that you will take a little time to think it over before our meeting.
Update 4/25/05
Update 4/21/05
Happy Birthday, Samuel!
You are three today! In some ways it seems like just yesterday I had you. I remember your pregnancy like it was last month, and your birth as well. The day you were born changed my life forever. I guess I was lucky to be blessed with the feeling that you were very very special. In a way very different from my other children. The bond I have with you has only been strengthened in the last three years. You are pure joy, pure love, and a perfect example of firgiveness. I have learned so much about the Lord from you. You are my heart, my soul, and always will be the sweetest man in the world.
I give thanks to God for your life today. As Toni said when you were born, "God knew what I needed even if I didn't." He surely did. I love you, baby, more than any words can express.
I guess on a day when I could feel a bit sad, I totally feel the opposite. I feel thankful, I feel love.
Thanks to my, and Samuel's, angels on earth, Kristina and Monika. We wouldn't have been able to get through this last year without your calls, notes and daily communication. God blessed me with two people who could be my right and left arm in a time when I needed them most. He could not have chosen better. Thank you for wanting to help, for being here today, still caring, still calling, still writing. It means more than you will ever know. My prayer for you two is that God bless you with your innermost desire....which interestingly enough, is the same thing. God's ultimate blessing is motherhood, so I pray for your new additions to be chosen and sent to you soon. I wish you were here so I could hug and thank you personally but I guess that the really uniqe part of our friendship is that we have never met face to face. You two mean a lot to us, two shining stars who have helped to guide us through this last year. I pray that God bless you abundantly for the sacrifices you have made for us. I love you two! I am so glad to have kept up on this journal now for a year. Someday, when Samuel is old enough, he will know you both through these words. He will know you are angels to him. He will know unconditional love, love similar to the way God loves. Love without conditions, without jealousy, without complication. I have learned a lot from you both.
Thanks to you faithful readers, friends, prayer warriors. We could not have gotten this far without you. Your notes, your support, your gifts, the tremendous outpouring of support will forever be in my heart. To our friends at BBB, MDC and Diaper Pin and probably more communities I don't even know of, thank you for gathering together, spreading the word, and showing us a tremendous amount of love and support. We will never forget it. There are so many others who write, pray and send me notes that they are still present in our lives, thank you to you all! Shelby P, several Micheles, Jami X, Katie G, Melissa C, several Melanies, Lois B, Sandy D, several Elizabeths, Karen F, several Jens, Julie in TN, Kerry, Pam C, Jen G. Tracy in VA, Tracy P and Wendy M, Debbie, Stephanie and Louise Linda B, Amy S, and there are more, but it is morning and my brain refuses to work well. My gosh, what a list! Thank you all so much! I pray that the Lord bless you all. Our love to you today.
We are headed out of town for more celebration of life. Tucker, the pit bull, will be in charge of the house while we are gone should anyone be thinking of breaking in. ROFL!
Update 4/20/05
Today is Mark and my ninth year wedding anniversary and the one year anniversary of Samuel's leukemia diagnosis. I could not have planned today better. We are packing to leave for a few days. It is not an easy process to get six people ready to leave especially given the amount of things Samuel will need to travel. Between his stoma supplies, his food supplies and his food which needs to be prepared before we go, and the amount of cothing he goes through in a day, I figure he gets the biggest suitcase. The bikes are ready to go, Samuel got a tricycle yesterday to take along. The fishing poles are ready too. We are staying on a lake in the rainforest. Everyone is getting excited to go, at least those of use who know we are leaving anyway. I won't pack the suitcases until tomorrow morning, but it will be so nice to pack them to go stay somewhere other than the hospital. We have a lot of things to get done today before we can go.
Some history....
It is hard to think back to how different things were last year at this time. We knew something was wrong. I had even had a strange feeling over the weekend before his diagnosis that something could be REALLY wrong and cancer even entered my mind for a second before I dismissed it. We had talked about taking Samuel to the doctor the previous week but decided against it because he had so many bruises, we figured they would call CPS for sure. It is a sad state of affairs when you fear seeking medical attention because of that. Samuel had spent the previous week out in the back yard for the first time ever and he fell down a lot. Of course, now, looking back, it is easy to see why he was so weak. It seemed like he had been sick for at least a month. The previous month, we had taken him in to his doctor and he had had an ear infection which was treated with antibiotics. He seemed to get a little better, but about the time Anna got RSV, he seemed to get worse again. He slept a lot, was very whiny and clingy all the time. I chalked it up to me being away from him for two days with Anna in the hospital and he just was afraid I would leave him again. THe weekend passed and his bruises got worse, not better and we decided we needed to take him in to be seen. THe office did not have a spot for us to get in so we were put off a day. The following day, today, a year ago, he woke up and other than the brusises, seemed okay. However within hours, small red spots showed up all over his body, looking like a strange rash. We later learned it was his blood vessels rupturing and he was literally bleeding to death inside his skin. We could not see our regular doc because she was too busy so got in with the PA. The PA was a hag who immediately decided that since he was not vaccinated, that he had the measels. Of course she made that a huge ordeal. I would have taken that diagnosis over the one we got, but anyway, our doc came in to look and said it was not measels but possibly a platelet problem caused by a virus. We were sent to the local hospital for a blood draw, from BOTH arms. I was not impressed. And even worse, we had to wrap him up in a blanket so he could nto struggle to get away and hold him down while they tried to get blood. I say tried because he had so little blood and the veins were so messed up that a simple lab draw was horrendous. Samuel was screaming, and my older kids were crying int he waiting room because they knew something was wrong, and Samuel was being hurt. I was trying to hold Anna and calm Samuel. The tech apparently got the result for the first draw and asked me if Samuel had ever had a WBC done before. I said, "No, why?" She said, "Your doctor will have to talk to you." They already knew. She came back to do the other draw from the other arm, which irritated me NO end by then. Then our doctor was called and I was directed to the lab area to hear the news. I wasn't overly shocked I guess, because I had thought of cancer the weekend before. I don't know if it was God's way of warning me or not, but I told Mark and everyone was sympathetic. Our doc asked where we wanted to take him and we were trying to grasp how long we would be gone, etc. All she said was that he was "very sick" and we needed to get to a hospital immediately. We chose the hospital closest to us. Our doctor called and asked if they could take a case this bad, not yet telling US how bad. They agreed but wanted us to take him to the nearest ER for prep and then they would transport us. This seemed dumb to us because we could drive him in faster than going to one hospital to get to another but we did it. We called Mark's parents to come and get the kids and bathed Samuel. He was pretty lifeless by then. I tried to call my Mom but got no answer. I left her our cell and we hit the road. She called me while we were stopped at the gas station. She was in disbelief and started praying and reminded me to believe that the Bible says he is healed. We got to the ER, another horrible experience. They were expecting us and quarantined us immediately. We were taken to an exam room where Samuel was undressed down to his diaper. No one brought us a blanket or anything so I was trying to cover him with Anna's receiving blanket. He was crying and really scared. He only wanted me, Anna only wanted me and it was the beginning of the balancing act. Everyone asked us a million questions and a nurse tried to start an IV. About ten people came in to hold him down again and I was crying, he was crying. The nurse tried about 5 times to get the IV in and it failed. Samuel was screaming bloody murder by then and she asked another nurse if she wanted to try the other hand since she just ruined the vein. I said, "Yes, we want another nurse!" The other nurse came over and I said to her, "Now, you are going to get this in on the first try, in the name of Jesus, right?" She said she was. And she did. After that things calmed down. The attending doc came in and went over his labs and condition with us. His liver was enlarged, his spleen was enlarged. His heartrate was in the 160's. HIs WBC was 265K. HCT 8, PLT 6K. The doctor explained to us that a normal person's WBC was between 5-15K. If you had the worst pnemunia of your life, your WBC might be 20K. But with a WBC of 265K, "It is leukemia, there is no question." We waited for the transport team to arrive and went over the same questions with them, history, etc. They prepped Samuel who was quiet until someone approached him, and let me know that I could not ride in the ambulance with him. That was a pretty harsh reality. Up until that point, we kept him quiet by singing Twinkle Twinkle Little Star. He also had his duck, Quack Quack, that Mark had picked out for him for Easter. Quack QUack who has now been in more ambulances, OR's ICU's and hospital rooms than any other animal I have ever seen. I told the RN in the ambulance that he better sing to Samuel the entire way. He said he would. They told us where to go when we got to the hospital, etc and we were off. All I could think about was how scared Samuel must be. The diagnosis had not even hit home yet. We ended up going to the wrong hospital first and ended up getting to the right one after Samuel. He was very happy to see us and I was very happy to see him too. The RN asked me if I wanted to hold Samuel and I said I did. They brought a rocker in and I was able to hold him and try to comfort him. By then it was pretty much too late. They gave him Fetanyl, an IV pain med which seemed to soothe him and take away some of his pain for a little while. The ICU doc came in and went over the same questions for what seemed like the 100th time and gave us the diagnosis again. They let us know what the plan for the night was. Samuel got packed red blood, platelets and lots of IV fluids. They were concerned about him having a stroke, seizures, heart failure, lung collapse, or bleeding to death before they could help him. THey also were concerned about the leukemia cells that would be leaving his body also killing him as toxic waste. Initially we were told that Anna could not stay with us at the hospital but we took her anyway. She was 7 weeks old, who else was going to take her? But no one said a word. She stayed up half of the night but I managed to rock her, and rock Samuel most of the time together so she was pretty quiet. Samuel did great the whole night, in regard to him handling the detox of the cells, etc. He did nto have any problems that they were expecting. Later we learned that they did not know if he would make it through that night. Probably why Anna was never mentioned. Around 3am, Mark left the hospital for home. We had talked most of the night, asking all the questions....what are we going to do? How are we going to get through this? How do we tell people? What about the business? What about the kids? What about his job? It seemed an impossible mountain. In between all that, when Samuel was awake, I was singing Twinkle Twinkle to him every second. That was the only thing he wanted. That and to play with my hair. Mark went home. Samuel was not allowed to eat or drink pending the procedures of the next day and cried for milk. I asked and asked for him to get water or something. Finally our RN showed up with a bottle of pedialite. YUCK. First, he had never had a bottle and hated pedialite. They finally found a sippy cup and he drank all the water and thanked me, and went to sleep. I spent the majority of the night with the RN who brought us over, Ken. He was excellent. I could tell all of these people really cared. The shift changed and I was sorry to see him go, but then we got Mike and she was just as awesome. Definitely one of my favs. No one said a word about Anna, period. Samuel's WBC had fallen overnight due to the transfusions and IV fluids to around 150K or so. Everyone was pleased but he was not out of the woods yet. Mark called me and told me he did not sleep, but had a very emotional night. He had made some phone calls to friends to tell them the news. I guess he got all his emotions out in a day. Mine strung out over months. I never really had a major breakdown, I guess I was too busy. Samuel seemed to have nightmares that night and the next one. He was hooked up to the monitor so had leads on his chest, he had the IV in his arm, and he had oxygen in a canula to his nose. It was all I could do to keep him from pulling it all off. I realized how strong he was when he woke up and was scared to death and tried to pull it all off. I had to call the RN who brought more fetanyl to calm him down. I was pretty much up all night. The days are always better than the nights for some reason. Mark came in sometime in the morning and I called and told my mom stuff pretty much nonstop. Everyone realized it was Samuel's birthday and felt for us. The social workers and child life made him a birthday card and brought him presents and a blanket. He immediately sat up, got happy and played. It made me cry. It was a harsh reality. Later in the afternoon, the Onc came in and with the social workers, discussed the treatment options. It was agreed to start chemo, and put in a PICC line for meds. That afternoon, they did that under sedation. Mark and I had a parent apartment by then thanks to Tammy, and we went there so I could shower and clean up Anna. It was so hard to leave. Samuel had a spinal tap to check for CSF involvement and for chemo to be put in, as well as had his PICC line placed. Mike was kind enough to call us and tell us that he was done but not awake yet. I think we were there for only 45 minutes or so because I did not want him to wake up without me. Mark left sometime later and picked up the kdis for the night. Then began the dropping them off all over the place so he could be with us all day. We spent two days in ICU before going to the regular floor. But not without mroe problems. It seemed that everytime we turned around Samuel's PICC line was bleeding and oozing and someone was constantly pulling the bandages off and making him scream, me cry. It finally plugged up and refused to work entirely. They ahd to TPA the line and then told me if it did not work, they would remove it and put in another IV. They took out the old IV once the PICC was in. I was not impressed because all of these things were being decided at 2am and everytime they came in Samuel screamed and Anna woke up too so I had two screaming. One of the IV ladies came in and tried to make the line work. It still refused after hours of TPA. She decided to TPA it again and left it another hour. When she came in, she prayed visibly, and it worked. We were very thankful. We stayed five more days beyond coming down to the regular floor before coming home. Everyone marveled at how well he seemed to do. Little did we know.....I am so glad to be NOT back in last year today.
A little further back....
Mark and I got married In Reno. It was the only place that Delma could come to the wedding. My dad was living in CA at the time and drove her over. That was the last time I was able to see Delma looking good, and happy. She did not get the opportunity to really know Mark, unfortunately. But at that time, she was really one of the only people who genuinely happy fur us. I wish I had spent more time with her while we were there. We stayed in the Hilton and our rooms were scattered all over the place so it was hard to find people most of the time. Our first year of marriage was difficult since we got married and had a baby in less than six months. We had been together for two years prior to being married. We met, and we have never been seperated except in tragedy. Other than that, we could not stand to be apart. Mark is my best friend, my love and like Delma's husband, Mac was to her, my soulmate. I could not imagine going through this with anyone else. I love you, Mark! Definitely this last year has been the hardest our marriage has ever seen. Not hard becasue we were in disagreement, but hard in the way of life, the seperation, the choices, the pits of hell we went through. Mark said if we can get through this, we can get through anything. We can. I sure don't know anyone else I can truly be myself with, and have them come back for more.
Skipping forward....
Today in 2002 I was so hoping Samuel would share his birth with our special day. He did not. Toni said he wanted his own day. Check out these prego pics..... Looking back, I guess that was a good thing. Too many problems associated with this day. Samuel's birth and life have changed my life forever. He inspired me to be a better mother, he inspired a whole business based around him which continues to thrive despite adversity. He is true love, pure joy, and strenght beyone imagination. I am very very lucky to be his mother. He has touched lives, many of which I don't even know about. He has shared his smile for three years now with the world. Mark's Mom always thought I started the website just to have his baby book online. Maybe I did. Everyone would like their child to be special in someone elses eyes. Everyone hopes that their child will be remembered. Everyone hopes that their child will grow up and do something great. I have all this in a child of almost three. He is special, not only to me, but to many. So many people came into our lives last year to help in ways that were unfathomable to me until now. I have seen amazing kindness, amazing generosity and the power of prayers. I have so many friends around the world, because of Samuel. I have seen so much good, in the midst of so many horrible things. Thank you to everyone who has helped us. Your notes, your gifts, your prayers have gotten us through. Today marks one year that Mark has not worked outside the house. It is amazing to think about that. Because of the amount of support we have received, we have been able for the past year, to fully take care of our son, to get him healthy again. He is so radiant He is so full of life. I thank each and every one of you, more than you will ever know.
I guess today could be a bittersweet day, but I just want to move on, away from cancer and the torments of last year. Remembering the events of last year at this time, while very sad, reminds me to be so thankful to all the RN's and social workers, and child life ladies who helped us through, helped us to keep our sanity in the midst of the most awful things. These people are so very special to us. Thank you to all the RN's and doctors who genuinely helped Samuel, loved Samuel and continue to check on him.
Mark and I were talking the other night about the miracle of Samuel. It is hard to know what God'd plan is, why Samuel got so sick, why so many bad things happened to him. So many things unlike any other case. It is hard for Mark to think about God allowing Samuel to suffer, or if God allowed him to get sick, or if God gave him cancer, if God will heal his cancer. There are so many unanswered questions and it is a difficult discussion to have at times. We don't understand the suffering. We don't understand why so many other children suffer, and die. It is unimaginable, or at least it was, until it happened to us. Something has to change, and I know that somehow we have to be a part of that change. Or Samuel's suffering will be in vain. I can only hope that God brought us through this ordeal so that we can effect a change somewhere, sometime, either in medical care, or the treatment of this disease. I don't know what the plan is, but do know that God will use us.....
I don't believe that God gave Samuel cancer. But for the sake of those who do, this is very touching...
THE CHOSEN MOTHERS
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social
pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses
are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for
propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter,
patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with
cancer."
The angel is curious. "Why this one God? She's so happy."
"Exactly" smiles God, "Could I give a child with cancer a mother who does
not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair.
Once the shock and resentment wears off, she will handle it."
"I watched her today. She has that feeling of self and independence that is
so rare and so necessary in a mother. You see, the child I'm going to give
her has it's own world. She has to make it live in her world an that's not
going to be easy."
"But, Lord, I don't think she believes in you." No matter, I can fix that.
This one is perfect. She has just enough selfishness."
The angel gasps -"Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll
never survive. Yes, here is a woman whom I will bless with a child less than
perfect. She doesn't realize it yet, but she is to be envied. She will never
take anything her child does for granted. She will never consider a single
step ordinary. I will permit her to see clearly the things I
see...ignorance, cruelty, prejudice...and allow her to rise above them." She
will never be alone. I will be at her side every minute of every day of her
life, because she is doing My work as surely as if she is here by My side."
"And what about her patron Saint?" asks the angel. His pen poised in
mid-air. God smiles, "A mirror will suffice."
As our friend Mary would say, "Onward and Upward." We intend to enjoy ourselves, our lives and our children in the time that we have them.
Enjoy the day...we love and thank you all.
Update 4/18/05
Samuel enjoyed his party yesterday! It is the first party we have ever had for him where he understood what it was about and knew what to do. He was up until almost midnight last night talking about his cake, blowing out the candles and everyone singing to him. He was just thrilled with the whole process. He opened his presents about the same as he did on Christmas, very slowly and wanting to play with each one. Kaysha helped him get through them and read him all his cards. She does really well with the little kids and loves them a lot. Everyone did really well in listening to our wishes of NOT buying a bunch of toys that would either be broke or thrown out within a few days so other than the vacuum, he did not get toys. His room and A.D's room for that matter look like a mini Toys R Us. We asked for him to get some new tee shirts since we seem to burn through them these days if his G-Tube opens up and leaks. He is very particular about that, and if his shirt is wet, he wants to change it asap. Some days it seems like we go through ten shirts. Mark's Mom made him a few one piece outfits and embroidered some animals on them which he really liked. I just need to go put smaps on them. Samuel is busily vacuuming this morning. I think everyone thanked God for the miracle of Samuel's health last night. It has taken a year but he seems to be almost back to the child he was last year as far as social skills and personality go. He is no longer worried about everyone coming in contact with him being a nurse. We are looking forward to a joyous week here filled with enough happy memories that they overtake the bad ones from last year.
No update on Rachel, and Katie Rose has had a mild stroke. Their links are above. Please keep praying for these girls and their families. They are very close to my heart.
Much love.
Update 4/16/05
Samuel's well being has improved significantly today. He has seemed a bit off the last few days. Very grouchy, not that I blame him. I feel grouchy too. This last few doses of Methotrexate seemed to make him tire a bit more easily. He has needed a bit more rest daily again and wakes up from his afternoon nap in a horrible mood...kind of like I wake up each morning. But we are glad to see him perking up for his big week ahead. Tomorrow is his official 2nd and 3rd birthday party with family. We had a cake ordered to reflect both birthdays. He will be a little happy man tomorrow, that is for sure. He has finally opened up to family again and is no longer afraid or antisocial toward them. That is so nice to see.
Our wedding anniversary is Wednesday, and so that day is also the one year anniversary of this crap. Thursday is Samuel's actual birthdate, and the one year anniversary of us deciding that it was okay to put chemo into his body. The beginning of what seemed like the end for quite a few months. Our trip is planned for this week too, and I cannot wait to get out of here.
A friend sent me a note this last week or so, acknowledging that this next week will be emotionally difficult but hoped we would find some joy,some reason to celebrate. While it would be a lie to say that my mind does not race with memories, or what seem more to be like flashbacks of horror, we will celebrate this week. Samuel is alive, he is turning three, at home. He is happy. Our family is together, things are easier than they were last year at this time, that is for sure. My mind is at rest and at peace with the decisions at hand. I am still married to my love, my best friend, though we have talked about renewing our wedding vows on a DIFFERENT day to become our new anniversary since our date officially now sucks. Maybe someday. We are all alive, we are together, we are not living in a state of emergency, life is good...mostly. It is really hitting home that you need to enjoy the day that you are living in because you never know what will happen tomorrow. We have made the best of our situation and continue to look for ways to make it more livable. Right now, I don't know what tomorrow brings in regard to Samuel's treatment, etc but I am determined to enjoy this week.
By the same token, I have a heavy heart tonight as I check on some of the kids I have been following in the past months. One girl, whose link is not above, died last week. She had ALL twice, and AML twice. Two bone marrow transplants and three relapses. Her page has now been removed by her mother but she will remain in my heart for quite some time. What an unfortunate loss for the world. Two other little girls need your prayers. One is Rackel, whose family has done everything to try to turn her cancer around. Diet, holistic, herbs, etc. All this after chemo and radiation and surgery failed them. They jsut recently uprooted to get care for her and came back home after a few short weeks. She is in the ICU now, on a ventilator, with a tumor threatening her lungs. The situation does not look good and she needs a miracle right now. I read her latest update and my heart sank, I cried for them. I just don't get why life is so cruel. Another girl who could use prayers is Katie Rose. She was diagnosed with leukemia in February and has some startling similarities to Samuel. She has a shunt for chemo, and is currently experience severe bowel issues. Everything with her treatment is up in the air since she has some major unrelated medical issues as well. My heart just aches for them knowing that they have a painful road ahead that few have traveled. I would sure appreciate your prayers for these girls. I remember going through our own turmoil with Samuel all too well, and it is just so hard to watch another suffer because cancer is stealing from their life too. Ugh, this just makes me sick to think about.
I haven't sent the Onc a note as of yet. Not sure when I will find time to do that. Honestly, I wonder if he will even look at it before hand. Looking at it five minutes before the meeting will be unhelpful to us all. But that seems to be the nature of the docs.
Remember little Samuel this week and the miracle that he is. Thank God with us that we are able to celebrate his birth, and the incredible impact he has made in our lives. The bond I have with him is unlike any other in my life. Enjoy the day that you are in and give thanks for the joy in it even if it is small. Our troubles surely seem small in light of others. Much love!
Update 4/14/05
The last few days here have sucked. Trying to make life and death decisions always do. I keep hoping the headache I have will go away since I have had it over two weeks now. And is is getting better.....
I have spent the last few days buried in research trying ti piece together the events of last April and May. What I read about typhlitis, Samuel's major contributor to the loss of his colon, was numerous case studies linking Doxorubicin/Danomycin with it. Mostly happening in induction treatment, 30% of the typhlitis cases are leukemia patients. 10% of leukemia deaths due to chemo are from typhlitis. Typhlitis happens most often with the presence of pseudomonus bacteria, neutropenia which was prolonged, prolonged ileus, prolonged antibiotics, all pointing to Samuel's case. The toxic problems with Vincristine may continue due to the toxicity of the drug to Samuel's gut. While he cannot get typhlitis again, he can continue to have gut issues and blockages caused by Vincristine, aggrevated by Doxorubicin and steroids. We have tryed to work the puzzle of his treatment in several ways but at this point, our decision is that we will not do that month of treatment at all. At least not with those three drugs in combo, While he may do fine, chances are he won't and it is not a risk we are willing to take at this point. Any drug that attacks the intestines directly, is a no no at this point. We don't want to lose any more gut, or have any other neuro issues, or God forbid, something else no one has heard of. Not with the no guarentee of cure we have.
I did some research on dormant leukemia cells and found the answer to my question about why people relapse, some years after finishing treatment and found that dormant cells hide in the marrow and since chemo only attacks the rapidly dividing cells, these cells are missed. This is a reasonable explanation for why the maintenance treatment lasts so long. To catch any cells that activate. The Onc from our former hospital, whom we liked, the one who retired, said that LTM for ALL kids first lasted 10 years, then they cut it to 5, then 3, then 1.5 years. At the 1.5 year mark, kids started relapsing a lot. The three year mark seemed to have similar prognosis to 10 year LTM. So I get the logic there. The fact remains that unless Samuel's residual cells reactivate, assuming he has them, the chemo given at this point is useless. Further, my conclusions that diet are most valuable is even more important as they are using isolations of Vitamin A to try to kill off these residual cells. In essence, get the immune system to take care of the cells itself. Especially considering that relapsed ALL is almost a death sentence, this according to oncologists as a whole, because the cells do not reapond to the chemo as they have built up resistance. So, in conclusion, it is not all the shocking that some kids can be doing fantastic one day, and over the next week, relapse. Becasue the cells have activated and once they start dividing, they can go from 1 cell to 250K in ten days or so. To the family, this is a shock, but looking at the medical science, it is not shockiing at all. Another pitfall of chemo IMO. Again, this is why kids can also relapse ON treatment. The cells wake up, divide, resist chemo. It is a vicious cycle and one I want to break free of.
We talked about the MRD testing again to look for dormant cells in the bone marrow, but ultimately it would not change our decision at this point. Even MRD does not show every cell, they are too small. This cancer has stolen enough from us. I cannot even think of more months of pain and suffering for Samuel. It would be one thing to drop his counts to 0, and he get some little thing, but the risk of loss of more vital organs, more damage, etc, is not a risk we are willing to take. Either the chemo he has gotten thus far, has killed the residual cells, or it did not. Only time will tell. The fact remains that the chemo is too toxic for Samuel in the said regimen. I need to further analyse the info I have found to make more conclusions but I feel very strongly that we are making the right choice for Samuel. We will not "kill" the leukemia by killing every major organ in the process. That is no quality of life, he has the right to his body integrity, at least what is left of it. I think our Onc has forgotten his major issues because he has done so well the past two months. Like all the intestinal issues have went away. Maybe he figures that him living in the hospital with major complications is okay as long as he is alive. Well, it is not okay with us.
God is in control. EIther he will relapse, or he won't. I will not be responsible for dumping any more toxins in that I KNOW have previously caused damage. I will not be responsible for any more organ failure or demise. Samuel has the right to a life which is happy and healthy. If he cannot get beyond the cancer on this earth, then he WILL in heaven. I don't want to bury him, can't even bear to think of it. But by the same token, I don't want to put him through something that I know in my gut will destroy him. Not in this lifetime. I am his mother, I will protect him by doing everything I am currently doing both nutritionally and holisticly. If the time ever comes when that is not enough, I will then hand him off to Jesus and Delma and I will do so knowing that he had the best possible life he could have here. Earth will be the only hell he will ever know and surely he has seen the pits of that.
What this means for his continued treatment with our Onc, I don't know. I will be letting him know our decision soon so that he can ponder it. The second month of Delayed Intensification is similar to the first month of Consolidation which Samuel did fine in, other than the Vincristine part. Should any cells "wake up" they will be covered. Or maybe he can dig deep into his resources and find some other alternative to the first month. Or maybe he will decide he doesn't want Samuel as a patient. We shall see.
Samuel has been a little on edge these last few days, most likely from the chemo. The nadir for Methotrexate is days 4-7. That would mean over this weekend would be the worst time. Then recovery between the 10th to 14th day. We are planning to do his birthday party this weekend rather than after. Last year we planned to do it the weekend after his actual birth date....but of course, that never happened. So I pray he will get to feeling like himself soon. He is just a tad grouchy, and just threw up all over the house....hmm.
Update 4/11/05
I feel like someone stuck a knife in our balloon of normalcy, That feeling of "everything is okay," or "it is a new day..." is gone. I am totally and thoroughly disgusted and pissed off as I type this.
Samuel is fine, BTW. His counts today were outstanding. WBC was 10K. That is the highest I have seen since last September. His ANC was 7700, another record high since then. HCT was 35 and PLT were 680K. His weight is now up to 15.7kg, the highest recorded weight for the year. He has had another good day despite his 300mg dose of Methotrexate. We had a late appt in Seattle today so ended up coming home in rush hour traffic. We had bad traffic going up as well due to a jack knifed semi blocking the entire hiway. Felt like we would never get there, and then like we would never get home. Adding the traffic mess only added to the general pissedoffedness of the day. I hate chemo days anyway, who am I kidding?
I did not bother to make a list of questions/concerns for the Onc since pretty much everything is based on what he comes up with for a protocol for Delayed Intensification. And, indeed, he did exactly what I thought he would, pretty much stick to the protocol. One which we have only loosely stuck to. Loosely stuck to only because the first three weeks of this protocol put Samuel in the hospital for three months and the problems of which have taken us almost a year to completely resolve. And yet, they are not resolved because his intestines are not hooked up. The first month of Delayed Intensification is almost exactly like the first month of Induction, or the month that put Samuel in the hospital for three months. Today our Onc stated that we should come back in two weeks to start this phase of chemo, and talk about what chemo to give. Then he shared with us his tenative plan, which was basically following the protocol, minus the L-Asp which he will never get again, and giving the Vincristine at half doses. Oh yes, then there are steroids, given at even higher doses this time around and the "other" chemo which is made more toxic from the steroids. I had to take a double take after hearing that. First, have us come in with the idea that he is getting chemo without a clear plan, I think not. Second, give MORE of the stuff that almost killed him, I think not. Mark hit the nail on the head by saying he will get treatment like he has active leukemia when he does not. OKay, my respect for the Onc has just been knocked down several notches in thinking the we will just fly by the seat of our pants. I even said to him, "Let's just hit him hard with tons of chemo and pray it doesn't kill him..." Want to know his response??? No, you don't. It was, "Well, that is what we do with everyone." For anyone who thinks this is not serious business, think again. What we do here is critical. Critical for many reasons. The reason this phase is so important is by adding it, the cure rates drasticly improved for leukemia. So there is a rhyme to the reason. But on the other hand, I am sick and tired of the misery caused by the cure which is not guarenteed and I am equally as frustrated that it is just accepted as norm. I guess that since Samuel did not go through active hell at Children's, they think somehow it won't happen again. Or they don't fully respect the suffering. So I told the Onc that we were in no way coming back for chemo witout first having a sit down drag out conversation, which will probably borderline fight because I could feel my blood boiling today. Screw that. There is NO rush to do anything that we don't all agree on. Period. I don't know why I am so surprised, I knew he would do what he did, I even mentioned TO HIM that I knew he would do it. Stick to the protocol, that is all they know to do. And then we get back to that time factor again. I guess he doesn't have time to think it through, research, ask another Onc, whatever because he sure hasn't at this point. Sure, let's just come in in two weeks and do whatever. Hope he does not die. Over my dead body.
True, there are some good factors we have in our favor now such as Samuel's excellent health. he was very very sick last year at this time. And his good nutrition, which we did not have the benefit of last year at this time either. But on the other hand, we have no colon, and what is left of the small intestines is still red and taking on the damage of more chemo. All of the chemo coming up either terribly damages the gut, causes severe cramping, or is excreted by the gut, versus the kidneys. This will be the first time since last April where he will not only be peeing chemo, but also be pooping it. That rotton toxic chemo poop is what ate holes in his colon, destroyed his anas not to mention the cecum and appendix. That rotton toxic chemo was stuck in there because of the chemo which causes the gut to cramp and stop working. Oh, and dare I mention steroids, which just ruin everything. The doses they give to kids as "chemo" is overdose if you look at the signs of overdose in a durg list. So let's hit him hard with this combo and see if a child who already has proven to have a sensitive gut, can handle it. And of course he is considered "high risk" so we get mega doses. I had to call Monika tonight because she is the only one who truly understands everything about wht has happened and what is to come. As she says, what is the definition of insanity? Doing the same thing over and over and expecting a different outsome. You know, maybe I am the nutcase because I want my child to live and suffer no more. Is that too much to ask? What is worse, is that I cannot even explain it to him. It might be better if he at least knew what to expect, but he has no clue. Life seems so cruel tonight. Our Onc did say he could adjust the dosing of chemo if there were too many side effects....really? In my experience, and Monika's for that matter, once you see the side effects, it is TOO LATE. They figure one dose of chemo takes 10-14 days to manifest as far as counts dropping, etc. By that time you could have had two, maybe three full doses. That means your counts are bottomed out for 2-3 weeks. High risk of infection, high risk of sepsis, both of which Samuel had and thankfully he beat the odds which at one point seemed stacked against us. Let us not forget the hydrocephalus and all the agony that caused. That for which we still have no clear reason as to why it happened. For awhile there, Samuel was not a whole lot different than Terry Shaivo. He was basically kept alive by TPN. He did not walk, talk, barely moved, did not seem to care if you were there or not. Did not seem like my boy anymore. Can anyone imagine that? Fortunately his hydrocephalus was cleared up and there was no permanent brain damage but admittedly, everyone thought and told us otherwise. BTW, this was all chemo induced in some way. It did not just happen. The closer we get to this, the more I am putting the brakes on. All I see are red flags, and thus far, MY gut has not been wrong. And trust me, I would love to be wrong. I would love for him to sail right through this next phase and I will eat every word I typed with tears of joy. All I can see is myself crying tears of utter despair watching them pump the red poison in. And worse, having to give him steroids. And if I spend one more night trying to console him while he is crying that his tummy hurts, or he just is screaming and writhing in pain, I will just lose it. I noticed our Onc mostly directed his conversation today toward Mark, as if all the decisions had been made which annoyed me more than ever because NO decisions have been made and "I" am the one doing all the research. It is no skin off the Onc's nose if we should be inpatient another three months, what does he care? He goes home, has a normal life, takes his family to London for a few weeks. I am here working my butt off so we can get a two day trip which will not be nearly long enough, but will have to suffice because the cash reserve must be available JIC.
I am just really really mad. Monika told me to go watch a funny movie, or something because this cannot be solved tonight. Didn't happen. Not that I did not want to, just had too much to do after getting home late. And to top the day off, poor Samuel, brave sweet boy that he is, had his port accessed today but someone who usually dues not do it and she somehow missed the hoe a little and really hurt him. He usually does not even cry but today he was just sobbing as she tried to fix the needle.. I guess I should have known that was a bad sign for the day. I am so sick and tired of people hurting MY little boy. I hate it, I have had it. I guess I will just go to bed. Please keep praying fur us as we try to make these decisions. Much love.
Update 4/7/05
Well, I called and cancelled our clinic appointment for tomorrow. Mark and I are still feeling crappy. Him worse than I, but he has only just acquired the illness and I am going on two weeks of it. I will be glad to see this one go away. My ear is plugged, my throat is still wore and my head still has a dull headache that comes to visit several times a day. The sad thing is that we have normal immune systems and cannot seem to shake whatever this is. I could not even fathom going into the clinic tomorrow and spreading it, or worse, being quarentined for 3-4 hours in a 14x14 room with six of us. No thank you. We were not even seeing our Onc tomorrow anyway and he will be back on Monday when we are rescheduled so it works out better anyway. I hope and pray we feel normal by then. I feel like an idiot even writing that when I think of the amount of time Samuel spent in misery, and then wonder what the future has to offer.
I forgot to mention in the last update that Samuel seems to have grown overnight. Suddenly he seems bigger and everyone has noticed. They tell you while on chemo, kids don't grow because the poison literally rips apart the DNA and RNA But somehow he has grown and it is kind of cool to see him bigger and still so full of life.
I spoke with Monika yesterday and we went over what was said with the ND and what needs to be said with the Onc. Our Onc has stated more than once that he is very nervous about the upcoming treatment. That is more than a little unsettling. I suggested to Monika that if he is nervous that I would think that would be a good time to lower chemo doses, etc, rather than dump and pray. She told me that Oncs don't like to do that, but rather they like to give as much chemo as they can, to the point of toxicity without killing the patient. I would say, we have already been there and done that. I always get a lot of clarity in talking to Monika even though sometimes I feel like I talk in circles, and I probably do. I am so glad to know Monika. I was thinking the other day about why we go through things and the good that comes from them. I thought of Monika, going through a nightmare called cancer, and then several years later, being able to help Samuel and our whole family because of her experience. Proof God uses people even when they don't know it. At any rate, I don't have a lot of idea what will happen regarding treatment yet. Flip a coin, you lose either way....that is how it seems anyway. None of the decisions are easy and knowingly setting Samuel up for something rotten seems absolutely cruel. Especially given what he has been through already. And talking to Monika reminded me that we will be starting the same treatment we started last year, at the SAME time of year. LIke coming up on the one year anniversary of this nightmare was not bad enough but to think of starting it over again...ugh...it is too much. Here we are whining about feeling like crap and Samuel could be so much worse off.
On a better note, plans have been made and we will be leaving for a few days! Can everyone say PTL? We will be celebrating Samuel's birthday elsewhere, near the ocean. Far away from this house, the bad memories, etc. Somewhere where he can have fun, enjoy life and celebrate his second and thrid birthday. Somewhere that doesn't entail chemo, doctors, nurses, hospitals, or chaoos. Seems like it will be the last thing we get to do for awhile because we will quarentine ourselves again starting the more intense treatment. I figure if we stay on target, we will be hermits for about three months. Then Samuel can have his surgery and that will be another 1 week or more hospital stay. Then maybe, just maybe, we can resume somewhat of a normal life. I have enjoyed the last month and a half now that Samuel is well again and happy. Monika commented on the lonliness of treatment for cancer and she is right. Samuel doesn't know any different but everyone else sure notices. Last November and December were very lonely. I am in no hurry to start this treatment especially without a clear plan. Our next visits with the Onc should be very interesting.
I was thinking last night about how far Samuel has come since we brought him home in July of last year. It is hard to look at him today and think of him not walking, sitting, standing, or talking. Crying about everything was about all he could do. He was always scared to be moved, picked up and held. I would try to cuddle with him and he would cry. We had to tell him what we were going to do with him, like say, "I am going to pick you up and take you to your bed," if he was out in the living room. Then he might not cry as much as he would have it you simply picked him up without telling him anything. We bought the only stroller we have ever used at that time because we could not figure out how we would be able to get him into and out of the clinic for long visits. Now he runs up and down the clinic hallways and we still run into people who ask, "Is that Sam?" People who hear him talk and about come unglued. He has been through a lot. I don't know how anyone could read his story and not see the miracle he is. As wel look to the future, I will hold on to that miracle. Samuel is so much stronger now than he has ever been in his life. Pretty impressive given the last year's events. He has not been sick with a cold or flu for almost a year now. Last year at this time, he had been sick every month...for at least six months in a row. When I talked to the ND, I told him that in looking forward, I cannot imagine having things start going out of control again, like what happened to us last year. I told him that I cannot do that again. I cannot even think about it. I pray we just continue this smooth sailing and Samuel continue to be an amazement to the medical establishment and a miracle to us.
I sat and read some of the older guestbook entries from last year and it is interesting to see what people were praying for, and how it has manifested itself now. A lot of people prayed that Samuel would be healthier and stronger than ever before...and he is. Thank you to those who took the time to sign the guestbook, leaving permanent records of your visit, your love and your prayers. I hope that those who were following our saga early on are still around not to see that their fervent prayers were answered.
Not much else to report, just taking one day at a time hoping for a clear picture to emerge. Thanks so much to you friends who love us and spend time in prayer on our behalf.
Thank you to those who have sent Samuel early birthday cards with stickers. He loves them and gets really really excited. Much love!
Update 4/4/05
Sorry no update for awhile. That headache that started on Easter has continued for the past week in addition to a sore throat and earache. Last night I had a stomach ache to go with it. The funny thing is that the symptoms almost disappear in the daytime but show back up around 8pm and by then I am so miserable I get everyone to bed so I can go there too. I wasn't doing too badly until Friday after I spoke with the ND. I don't know if I had been gearing up for that all week and getting it overwith stopped my body from fighting off whatever bug is trying to get me down. Mark now has it too. We both are just feeling totally out of sorts. Factor in the time change, thankfully the computer and TV knew about it because we sure didn't. So trying to get used to that has me even more screwed up. So hopefully we can all get back to normal before the dreaded Friday, Samuel's next poison visit. I know I have been in overdrive the last two weeks or so but life just feels like a race I cannot win right now. I have been trying to sit down with Kaysha and Daniel after A.D. and Samuel go to bed, to watch some family TV and just take a time out. We all have been enjoying that.
Samuel is doing great. Hasn't missed a beat. No puking, nothing at all. He says some really cute things like, "How's it going?" and "I have no idea." and "Good day." His vocabulary continues to explode. It is really nice to see him happy all day with no pain at all.
I spent most of last week preparing for my phone consult with the ND. I started out with a list of questions/concerns but got most of them answered before I even talked to him through research, etc. But that research only brought up more questions. I found a few good websites which list chemo drugs, dosing, side effects, etc for doctors and nurses, not patients and it has been really unsettling..... I got to the point last week where I wasn't even sure if I was going to have a chance to get a tenative list of discussion items to the ND because I was buried in these other doccuments but I managed to get it all ironed out with none ofther than Monika beforehand and written up in a way that kept us on task while on the phone. Of course that 30 minutes of time allotted turned into an hour. But it was good. And while I paid out the nose for that call, he gives me a lot of short calls free in the interim. I sent him a list of Samuel's most current labs, where we are in the protocol, and a general idea of his diet. Basically a background and then a question sheet. I was hoping he would see it before the call, but no such luck. It was handed to him about two minutes into the call. So we went through the list together and again, he asked if I wanted to come work for him. Of course, someday I would love to, but we all know that will never happen.
One of my top questions now was in regard to Samuel's counts not being affected by the chemo. Why bother? Is it doing anything at all? His feeling was that Samuel is so strong and healthy now that his marrow is just recovering at top speed. Methotrexate is a mimic of folic acid, it tricks cells into absorbing it thinking they are getting folic acid, then causes programmed cell death to cancer cells. He said a normal healthy cell might take it in and then realize it is not folic acid and reopair the damage and prosper. He felt that we were getting some benefit to this course of treatment.
We talked about the "chip and cheese" diet that Samuel seems to not be able to get away from and he feels that he is still craving salt. I told him I was hesitant to take it away only because he doesn't have a colon and probably needs it. He agreed but changed his su;;lements to try to curb this. I think I may have already solved this problem over the weekend though without them. He is back to eating bananas again.
We talked about Delayed Intensification and the chemo drugs, etc. Dosages, damage, etc. It was this first month of chemo that put us in the hospital for three more months and ultimately took six months to rectify. That is what we are looking at going back to in just a few short weeks. The unknown. The dump chemo in, pray it works, pray it doesn't kill him. I hate that. Apparently there is not much I can do about it. He doesn't feel we will have those type of issues again. Samuel is far too healthy.
We talked about getting through the next two months...wow, that seems like a big hurdle right now, and then going off treatment for the next two months to get his intestines hooked up. Sorting out a plan of attack for that time. I asked him if he could imagine getting his gut hooked up and hten having a relapse. His exact words to me were, "Things don't go south withotu a lot of notice. In 20 years of dealing with cancer treatment, you see trends. I don't see that with Samuel. Well, don't write this in stone....but he is just doing great now, very healthy." Well, he is right about things going south. Everytime things have turned that direction, it was NOT an overnight thing. It was obvious for weeks, if not months. He assured me that he will be here every step of the way and if anything and he means anything comes up, call. If he is inpatient, call, he will come see him. I hope to not go down that road. We talked through quite a few other things as well. When we talked about chemo, and continuing treatment vs. walking away, he asked what our Onc said about how Samuel was doing overall. I told him about our previous meeting and he feels like our Onc won't steer us wrong, he he feels Samuel has a good chance at a cure, press on. I really enjoyed the part of the conversation when he said ,"some of these oncologists need to be shot..." Yes, I can think of a few!
He asked me if I felt better toward the end of the call. I told him I would not feel better until we get the next monts out of the way. Then, maybe, just maybe a sigh of relief. It is not that I am skeptical or have lost my faith, but there comes a time when you have to face reality just in case it is about to kick your butt, at least you can be prepared. Knowledge is power and I want to be sure all my bases are covered and that we are making the best decisions we can. Looking at the chemo from the doctors notes is just so....well, sickening. The ND told me that he wants ME to come in for a "wellness" visit.....on HIM. And he said I better take him up on it because he rarely gives anything away free. "Now, Jennifer, you want to be sure you live long enough to see Samuel in his 30's....your stress level is not good for your health." If you can figure out how to lighten my load, do tell! But that was REALLY nice of him. I might take him up on it. I don't think I am a ball of wound up stress, just trying to get the job done, that and many other jobs..... At any rate, the only doctor I see is Toni, the MW, and only when I am pregnant, and she is not a doctor, LOL. And now there will be no chance of that, meaning pregnancy... we will see.
And so that is done. Now on to my list to e-mail the Onc. Haven't started on that yet. I still have a week or so to ponder it. It won't take nearly as long to write up because the Onc has little time for discussions. At lesast with a ND, you get what you pay for, exclusivity.
Well, I wanted to write more, and have for the past few days but I feel like crap so I will cut this short. A prayer request is in order. Please keep Samuel in your prayers for the upcoming months bring the unknown. Right now we are living in a really good place. Things are going well, he is doing great. But Mark and I have to make some really hard decisions regarding his treatment and we have to do it in the next two weeks or so. Decisions about drugs that are very life threatening and drugs we know have harmed him in the past. Decisions about a drug which accumulates in the heart and every subsequent dose adds to the stress there. And the thing is, there is no right answer. I guess we can rest a bit easier knowing that we are treating him at a place that will manage any problems that come up, and if not, I will just call the ND in on it. Will I rest easier tonight? No. As Mark says, prepare for the worse, pray for the best. And so it goes. Much love and thanks for your support and most of all, prayers for Samuel.
Update 3/29/05
Samuel's labs....
WBC 6400
ANC 3937
HCT 35.5
PLT 784K
As you see, the methotrexate did not affect his counts. They are still well within the normal range. His weight is up to 15.2kgs.
Samuel woke up happy today but was immediately sad to not be able to eat. He did fine once we got into the car. We left late but still managed to arrive on time....Mark told me he drove 75mph the whole way and that was why...hmm. I did not notice because I literally had my nose in a book.
The clinic was pretty dead for once. I liked that. It was nice to not see so many poor sick kids. Kaysha immediately befriended an older girl with leukemia and Samuel and Anna played chase and hide and seek in the hallways. I told Samuel last night that he had to go to the doctor and have his port accessed. When the lady came to get him, he happily walked back and got it done, no problems, no crying. He did great. He was happy and talkative to everyone up until the Onc showed up. Then he decided he would be a little whiny. I briefly takled with the Onc about Delayed Intensification and also mentioned that I would be consulting with the ND on Friday. I asked him if he checked his e-mail and he said he did. I told him I would e-mail him some stuff that comes out of the visit with the ND so he could roll it around his brain in his spare time in preparation for our meeting with him. We always have these "meetings" where we discuss treatment and he always wants to stick with the protocol and I am not sure why we even have meetings. So I am going to make them all work this time. I got a lot of things done today in prep for Friday but it is all in my head and needs to be on paper so I will work on that tomorrow among everything else so I can get it to the ND in time for Friday. Our Onc told me he is leaving for L.A. tomorrow and then going to London for another week and won't be around for Samuel's next visit. Must be nice!!!!!! I told Mark we need to get out of here soon. Maybe we can go for our Anniversary/Samuel's birthday now. Samuel goes back to the clinic around April 8th and then has 16 days off. Then the dreaded.....
Anyway, he got his spinal tap which I hate. Mark took the kids to lunch since we all starved while Samuel could not eat. I took Samuel in, held him while he went to sleep and then went to the waiting room. Mark and the kids were not back yet and I just prayed that God would take care of Samuel and everything would be fine. It seemed like it took forever for them to come back but I was sure happy when they did. I hate waiting for that alone I guess. Samuel then got his IV Methotrexate at 250mgs and finished up his IV bolus of fluids. Our Onc had that all ready to go for his which was great! No begging for water at least. Anyway, he did fine, came home great, ran around like a madman. His newest thing is to get Kaysha and Daniel and say, "let's run..." Then he takes off. Poor A.D. can't quite keep up but she tries.
Tonight, however, has been a different story. He has had a hard time getting to sleep and the "methotrexate cough" seems worse. I gave him benedryl and some cough medicine and zofran just in case...and he finally went to bed. I hope he is just over tired and the cough that seemed bad tonight is gone tomorrow. I hate that cough. I mentioned it today but of course it is considered "normal." I hope he is able to sleep, that we all are.
Thanks to Monika for the note tonight. It meant more than you know. We have to chat soon. Like before Friday, LOL.
Thanks for your prayers and well wishes today. Much love!
Update 3/28/05
Our Easter was rained out. We had terrible weather. I had a headache almost the entire day and realized part way through the day that I must be getting a sinus thing because my ears are bugging me, ny throat is acting up and my nose is too. Too much burning the candle at both ends I am sure. There is so much to do, so little time. I am trying to get prepared for my phone consult with the ND this Firday, work, and do the things normal moms to four do. AND I feel like crap. Oh the joys.....
We went to Mark's parents' house for Easter. Kaysha and Daniel hunted eggs outside in the rain and Samuel and Anna played with some new toys the Easter Bunny brought. We had a nice brunch there and then came home. We brought some eggs for Samuel to play with. Kaysha has hid them several times around the house and he finds them. It was kind of a bittersweet weekend. The 26th marked 8 years that Delma has been in heaven. I will never forget my Mom calling me from CA at 6:30am to tell me she had died. I flew down there on the next day, my birthday, and her funeral was on the 28th. Having Easter happen on this last weekend only made it more bittersweet because I plainly remember last Easter, though ti happened in April, Samuel was sick, we did not know it then, but I sure know he was now. The pictures from last Easter were the last ones taken of him before his diagnosis. Comparing this year to last, he is so much better now. Easter was a pretty low key day with the best part being Samuel running over to hug and kiss me and say, "happy birthday, Mama." That was a gift in itself.
His pink eye cleared up nicely and he decided to pee in diapers again. Guess he is not ready for the toilet yet, and I could care less. I mean, it would be nice, but no need to rush into anything. He has been running around like a madman again. I will be interested to see his labs tomorrow.
We head to Seattle tomorrow for his spinal tap chemo and more Methotrexate. I assume the dose will go up to 250mg this time unless his ANC has crashed. They also check the spinal fluid for leukemia every time so in that case no news is good news. I expect nothing but good news on that aspect. Our Onc agreed to IV fluids upon arrival for spinal tap days so Samuel won't get dehydrated when nothing happens on time. And with his stoma working so well these days, I know we are not going to have a great morning when he can't have chips and cheese the second he gets up. He cannot have anything by mouth after 8:30am and we need to be on the road by then. Guess it will be an early day for me.... Please pray for a smooth day for us tomorrow and safe travel. It seems like we have been home for quite awhile between this last two times into the clinic....I like it!
I must go to bed so I can try to be rested for tomorrow. Much love to you!
Update 3/26/05
Well, today has been a wash...but we did get some things figured out.
Samuel woke up with his eyes matted shut with dry green mucus. Really red all over the eyelids. I was hoping it would be better today, but it wasn't. He was restless last night and I swear I can sit here and type forever, until midnight and have peace, but the minute I go to bed, lay down, get comfy, someone is up. It is like they KNOW I am in bed. He woke up crying, wanted to sit in the chair with me, then wanted to get in bed and "sleep with mama y daddy." No spelling error there, he says the Spanish word for "and" which is "y". I was first thinking he was going to throw up, and then figured he could sleep with us until A.D. got up. But he only stayed for a bit and then wanted to get back into his bed. This whole scenario took about an hour. I turned off his food for the night just in case his tummy was bothering him. I also noticed he had not peed since his nap, about 8 hours earlier.
He got up today, fairly happy, with matted eyes and no pee. Nothing. We talked over calling the Onc Clinic to see what they thought since Mark was going to Seattle anyway, we could get it checked out if need be. (Mark made the ultimate sacrifice for us today.....let's leave it at that....)
The first person I talked to was pretty nonchalant about the eye thing and said we could take our appt with our Onc that was cancelled the day before. I tenatively took it but did not mention the no pee issue because I knew they would freak about that. As the morning went on, Samuel got really perky and pretty much back to his old self....happy. I had some eye drops that I got from a Dr. last year and we put them in his eyes. These seemed to help immediately. We decided that we would just not keep the appt after all because other than his eyes, and the no peeing thing, he seemed to be fine. I called the Clinic back to cancel and they freaked out and said they thought it was a complication of chemo and needed to be evaluated. If not there, then by our primary care MD here. Of course, we haven't seen our PC doc since Samuel's diagnosis and the time before that, when Anna was rushed by ambulance to the hosptial. So the last two times I took my kids to the PC doc, we went by ambulance to a hospital, I was not in any rush to go back. At any rate, I agreed that we would see someone locally. I called the PC office and they could not see Samuel. They offered me another doc and I said I wanted our doc or no one.
Last year, our PC doc's office decided to disenroll in our insurance plan. So back in June of last year, we had to pick a new PC doc out of thin air. We chose someone close to home but have never seen them. Interestingly enough all of Samuel's records from Childrens have been forwarded there. In fact, upon finally arriving home last July, their office called me to say that the PC doc there wanted to meet Samuel and see if they could be of help to us because they had a mounting pile of paperwork about him and no chart. I asked them if the doc made house calls because I wasn't taking Samuel anywhere. They laughed. Anyway, Samuel's insurance is now accepted at both places now and so I called this place. They were able to get us in, but I had to be a hag about it. They made a stink about him being a new patient and they needed moer time for the appt and I told them that the MD knows of us, just hasn't seen us because we are never home it seems. Further, all they needed to do was evaluate his eyes, nothing more. The person had to go ask the doc and it was okayed immediately. So when Mark got home, he turned around and drove us there. The office was on time and took less than ten minutes to get to, which is really a switch after what we are used to. The doctor came in, intorduced himself and went over what he knew of Samuel's history, which was a lot considering we were never a patient there before. "Finally, I get to mee you...." is what he said upon arriving into our room. By the time we arrived there, Samuel had peed a small amount into a diaper so I did not mention the pee thing. He apparently has pink eye and the doc perscribed some drops similar to the ones we had used earlier. Mark did not go in with us and wanted to know if I liked the MD. Honestly he did not leave an impression. Mark thought this was unbelievable since he thinks it only takes five seconds for someone to leave an impression on me. I did not get anything one way or the other. I am sure they would be fine to see on a casual basis.
Anyway, after we got home, Samuel was back to asking about getting into the tub again. I told him no, he could wait and he proceeded to undress and run around naked. Of course it was hilarious right up to the point where he went behind my chair and peed on the floor. I then realized what he has been doing the last few days. Apparently he does not want to pee in a diaper anymore so he is asking to get into the tub and pees there. This is why I haven't had wet diapers and he wants to take several baths a day. We rounded up some underwear for him and showed him the kid toilet seat and how to use it. He hasn't yet but he may just potty train. That would be awesome! No more peeing chemo all over himself. He is pretty clever I would say! He had to put a dipe on for bed and did not protest but apparently did earlier when Mark got him out of the tub.
The events of today got me thinking of the future again and I called and set up my phone consult with the ND for next Friday. Now I have to prepare my list of things to go over anf fax it to him so he can prepare too.
Anyway, I will hopefully rest easier today knowing that everything is okay with Samuel. He is just growing up, becoming a big boy. He was scared at the PC doc's office today though. Afraid someone was going to hurt him. Thanks for your prayers today. My bed is calling...much love!
Update 3/24/05
Everytime I come to this page to update, as I scroll down, I stop at the picture of Samuel, a few months old, in the tub....perfect. For a moment I wonder who it is...then, oh yeah. So I look at it awhile.....
The hospital called today. Apparently our Onc was going over our chart and decided Samuel is due for his spinal tap chemo after all. I say after all because when we were there previously, I asked about it and he said it was not due. I knew it was based on the days into this phase but hey, if he did not want to do it, fine by me. So they called today to confirm that it is due and the appt was changed from tomorrow to Monday. Monday at 8am. So we had a nice conversation about how we are never showing up there at 8am EVER unless it is to the ER and of course, they had to call the Onc to get his permission to change the appt to Tuesday. Again, what is he going to say? So now Samuel does not have to go in until Tuesday of next week. he will then get a spinal tap, and his other chemo assuming all is well lab wise. This does not break my heart to have the rest of the weekend off. In fact, Samuel has had a few off days the last two days and the thought of more chemo tomorrow was making me nervous anyway so truly God is in control and Samuel needs a few extra days off. Now we can all enjoy the holiday weekend...hopefully.
Samuel woke us up last night for another unexplained puking session. This time I knew he wasn't overfed. He had seemed off ever since getting up from his afternoon nap yesterday. His face looked more puffy than usual in the early morning and later the skin around his eyes got red and he just looked sick. He improved after puking and went back to bed but between him and A.D. I did not get much sleep. A.D. must be getting another tooth. Today his eyes still look funny and are making green crusties. He has needed more sleep the last few days, often sleeping in beyond 8am and going to bed by 9pm with a good size nap in between. His previous normal day was about 6:30am to 10pm with a nap in there somewhere. So a big difference.
To further add to my concern, I drempt last night, in the five minutes I actually got to sleep, that his ANC and WBC had crashed. His ANC was zero. And we had just taken him out and about exposing him to who knows what. The Onc was surprised to see his counts crash and just chalked it up to Samuel being Samuel. In waking and thinking about the dream more, it would not be too shocking I guess to see labs like that when you least expected it. I don't know if it is a warning or not but the dream, and us not going for more chemo tomorrow just say to me that he needs a little more time and we need to be more careful. Now we won't know anything until next week. I was hoping he would wake up better today, but he did not. He also has the "methotrexate cough" as we call it. A dry cough often associated with MTX because it destroys lung tissue. We are at about day 10 of the last dose given which is when the poison starts to do it's damage and it is cumulative from the proir dose.
He has still been pretty happy and playful but yesterday asked to get in the tub all day and in fact got into the tub three times and snuck into the shower with Kaysha once. He seems to have suddenly remembered how much he likes baths and water. Used to be, you could not get into the tub or shower without him. And if that meant two to three baths/showers a day, he was fine with that. But yesterday was a bit strange because he asked to get in alone, vs. with someone else.
Samuel has learned how to close his G-Tube by himself. He has gotten up in the mornings lately and doesn't wait to be unhooked anymore, but takes his food tube out of his G-tube and closes it. It is great, other than if the pump is still feeding him.....
The kids boiled and colored eggs and then ate them. Daniel must have ate about 6-8 of them in the last day. Samuel was thrilled with the eggs. He likes carrying them around and then cracking them. He cracked the first one and I told him he could eat it so he bit the shell and all, ROFL. All plans for the weekend are pending how Samuel feels and looks at this point. It might be quiet around here, we shall see.
Please pray for Samuel. It is annoying to see him a bit off after seeing him enjoy life again. Much love.
Update 3/21/05
Feels like business as usual around here...I like it. Things are still great and Samuel is doing very well. He had one day where he "looked" a bit pale, like his hematocrit may have dropped a bit, but after some green veggies over 24 hours, he is back to his rosey red glow. We had one episode of throwing up around midnight a few nights back for no known reason other than I may have fed him too quickly through his tube. I had gotten really good at not doing this before the revision but now that he has a new stoma, it has been a learning process all over again. I can definitely see a slowing of the gut with this last chemo but nothing compared to what we have dealt with in the past.
When Samuel was born, Daniel, who was 3.5 at the time, started calling him "Googie." LIke Boogie only with a G. Why, I don't know. Not that I was any better because I pretty much called him Pooper from the start. Good lesson in being careful what you nickname a child. Anyway, before Samuel was diagnosed last year, when he was really really happy, or having a lot of fun, he would run around and say, "googie googie googie googie googie," as fast as he could without stopping. It was hilarious. I had forgotten all about that and the name which Daniel does not call him anymore until just the other night he was running around like a nutcase and started saying it again. Somewhere he pulled that out of his memory band. So I take that as he is feeling better than ever because that was always a sign of sheer joy.
Samuel and Anna are like the Bobsey Twins. When one gets up from a nap or nights sleep, they immediately go looking for the other. Anna is learning all the games of chase, hide and seek quickly. Kaysha and Samuelo are really close as well. Kaysha enjoys playing with babies and even acting like one so that works out well. Daniel and Samuel seldom play together, why, I don't know. Anna will play with anyone and beware of laying on the floor because if she sees you, she will pounce. Must be that animal in her coming out again. She is becoming a very affectionate sweet little girl. She does not seem like a baby when you watch her walk around in big girl clothes. She interacts like a much older child.
After my last update, we thought long and hard on how we could get this house situated so that it does not drive me crazy for the next several months. We did make some good choices which of course required moving everything around again, Mark's FAVORITE thing, NOT. As a result, Anna now has her own room. She has takem to it well. She has napped in there pretty good the last few days and slept until 1-2am before I have to go get her to co-sleep or put her in the hammock. But it has been nice for us since when we go to bed every night, just opening the door wakes her up. And no one could straighten up the room or put clothes away because it seems someone is always sleeping in there when you want to do it. We have been doing some major spring cleaning. Kaysha and Daniel had the misfortune of having me clean up their rooms with them today since the job they had done previously was NOT good. So tonight they go to bed in nice looking rooms. But looking at the big picture, getting things in order, cleaning up, and preparing the house for sale, it is obvious that it will not happen overnight, or in the next few weeks. I like to focus on one task at a time and get a lot of work done at once. For the last two days, I sewed and did very little house stuff. Today, we attacked the house, all day, and did school at the same time. Tomorrow it is back to sewing. I like to finish 3 or so projects at a time. But alas there is still so much to do, so little time.
I got some really wise responses to my last update that I wanted to share. I am constantly reminded of how blessed we are by the friends we have made in the past year. While I would love to erase the last year from my memory entirely, I would hate to lose the friendships I have made along the way. The only annoying thing is that NONE of them live in this state. I keep telling Mark I do not understand why I cannot find people like these ladies here. His response is that I would have to get out of the house more....hmm.
Anyway, from my friend Tracy in VA....You mentioned how different things feel now (i.e., casual conversation) and I think that you probably have some kind of PTSD (post traumatic stress disorder). I don't mean that in a bad way at all, its just that in less than a year you have lived a hell that very few people (even those who have had to deal with leukemia) can relate to, and that HAS to do something a person (at least to a person with a heart and soul, which you definitely have).
And I don't think its one of those things that will ever go away. Time is a great healer, and it will get better, but you will always have two lives...one Before .Leukemia. and one After.Leukemia.
From what I have learned about you though, you and your family will rise above this. To paraphrase one of my favorite verses (Isaiah 43)...Your family will rise up as on eagle's wings, and soar over and away from this time of illness, triumphant in both Samuel's healing and in your family's love for God and for each other.
WIthout a doubt there is some PTSD. I know it. I am sure that the majority of it probably has not set in yet even. You just cannot witness and do the things we did over the last ten months without a residual effect. Someone asked me the other day if Mark and I were on antidepressants. I said no, we were not. I am usually to angry to be depressed and sadness is just short lived. I have too much to do. Bottom line, if I lose it, Samuel would not have a chance. If Mark loses it, then say goodbye to me. I guess the idea of antidepressants is to keep you functioning "normally" but neither of us have been dperessed...at least for more than a 24 hour period. If anything I am more motivated to get things done and deal with the problems at hand. But I will say this, my radio station could STOP playing Tim Mcgraw's "LIve Like You Were Dying." That would be fine because that song reminds me os Samuel, in a vegetable state and feeling more hopeless than I think I have ever felt in my life. I can still see that video playing on CMT and imagine myself in the hospital room wondering if things would ever be okay again. I have pretty much said for the start that I would need counseling after this is all said and done. Fresh air and normalcy have been a good natural medicine so far though.
Some words from Jami in CA..... I remember there was a time when I wished emotional pain could be seen in the same way physical scars can, so that people would know to be gentle with others when they were in so much pain. I still wish that we would all be more gentle with one
another, and that we took the time to be there for others on the day to day.
There is a revelation. Of course, I barely have time for others, but then at least I admit it. Hopefully in a few years, this will change. In a lot of ways, it seems like we "just" got home from the hospital. I have several tasks going on and there is this urgency to get everything done NOW just in case. Planning now for Delayed Intensification, just in case. Get the house in order, get some money put away, work, but don't take too many orders, just in case....Everything is short term, but in reality planning for the next few months. Probably a good way to live because you never know what tomorrow may bring. You might wake up tomorrow and not see your house for three months. You never know. So I guess with that in mind, I am just trying to get everything in order. Course, I say that as my sewing room looks like a volcano hit it, ROFL.
I talked to the "Voice of Reason," Monika in Canada, the other night. I told her about how Samuel reacts to someone who is hurt. If Samuel thinks someone is hurt, he will immediately start crying and ask if you hurt, and if you are okay and just get really upset. He associates the word hurt, with agony it seems. It is really sad. We were talking about this and Monika told me I will probably see more of these type of behaviors as he becomes more able to express himself and what he is feeling. We talked about how much we think he remembers. She thinks he probably remembers a lot, just cannot put it into words yet. He may need help in the future dealing with all that has happened to him. I hope when the time comes that he asks, this journal will be of help to him. But thinking that he has so much inside that he cannot express is kind of a slap in the face. It is bad enough I have to remember it, but he is the one who has to live with it. I guess maybe to some degree, this is how my parents felt about knowing I was legally blind from birth. It would be bad enough knowing that about someone else, knowing all the things they would never be able to do, and letting your imagination go wild with horrible possibilities. Having to live with it is very different. In my mind, based on my own experience, he will rise above all of his physical issues. To me, my lack of good vision is not a huge deal since I never had good vision in the first place. It is only annoying when someone points it out, which of course happened at school growing up, all the time. Samuel won't remember what his body was like before cancer, chemo and the aftermath. He probably does not remember what it is like to poop anywhere else but the air bag. I guess it is just more food for thought and let me tell you, my cup runneth over.
Our next visit to the clinic happens Friday. Labs should be interesting to know. Not trying to think about this too much right now, just trying to enjoy the eve.
Some big thank yous to post to people who have made great sacrifices to help us this past week. Thank you to Heather P, Karen F., Jeannine F, Kari M. and Sandy D. I am truly overwhelmed at your generosity to our family. May the Lord Bless you 100 fold.
Thanks to Angel Jenn of the package that arrived today. I love it. Samuel loves the books. he is really into books lately. He told me tonight, "Mama, let me read to you..." Then proceeds to show me everything in these beautiful books.
Thanks to all our customers who patroned our store this past month. it has been fun to sew for friends again. Thanks to those who spread the word we are sewing again.
Thanks to my special friends...there are so many! I treasure your calls, notes and kindness more than you will ever know.
A huge thanks to our prayer warriors. You are our backbone right now. Thank you so much for keeping Samuel in prayer. Much love.
Update 3/14/05
"Your boy is indestructible," says the Onc as he walks into our exam room with Samuel's labs today. You hear that and you KNOW they are TOO good. His WBC is 8K, actually higher than ten days ago. His ANC was 4500, also up. His HCT was 35.3, well in the normal range but down a smidge. His PLT were 350K which is down for him who is normally in the 600K's but he has tons of bruises from running here and there and everywhere so he is most likely using them up healing stuff. His blood chemistry showing electrolyes and protein were better than I have seen them in quite awhile too.
The Onc referred to Samuel as indestructible for many reasons, obviously his counts which haven't been touched by chemo and then he said, "he HAS to be indestructible or he would not have survived everything he has gone through." He was quite incredulous over how well Samuel was doing for the entire short clinic visit. When I hear things like what the Onc said today from "medical professionals" I have to think that this is a word from God giving us a glimpse into the future. I will never forget Tracy telling me that God is IN Samuel and that is why he had the will to live and survive the events of the last 10 months and I believe this with everything in me. I look at him and see the joy of the Lord. Oddly enough, I have had the sense that everything is going to be okay for the remainder of the chemo that is to come. Like the last battle is won. Of course, we shall see how I feel when we get to Delayed Intensification.
So Samuel got his 200mg dose of Methotrexate and has been busily dancing, singing and running around all night. No puking, no evidence of poisoning. I pray the feelings of peace I feel are true and continue.
The Surgeon was thrilled to see Samuel at his Post Op last week. Neither he nor the Fellow who was also there has seen Samuel a happy little boy so they were just glowing! I had to thank the surgeon for giving Samuel a stoma which finally worked. The surgeon noted that Samuel had gained weight from the previous labs and today he is up to 15.1kg or 33.2lbs.
We don't have to be back in the clinic until the 24th or 25th of this month. Our Onc was pretty sure that since Samuel did so well with the MTX last dose, that he would be fine this one too. I think he was a bit nervous seeing such good counts but ended telling me, "whatever you are doing, keep doing it."
I feel like life is playing in fast forward for us right now. There is so much I want to do and so little time to do it. It still seems like we live in our own little world here and when we integrate with others outside our home, it feels strangely odd. Maybe like we have a secret life, or have had one. An example, you go shopping, you bump into people in line, they start a conversation about something....usually the amount of kids we have and how hard it must be and I think to myself, boy do they NOT know what they are talking about. Samuel looks normal, he acts like a typical almost three year old. There are NO visible things to make anyone think he has been through so much so I guess I feel strange when people treat us in the normal way. I really want to say, "Hard? Let me tell you about hard....." But there is no point. Most people will never get it. And even if you do mention cancer, most people have no clue what that entails for a family. And then you take our history, which is NOT normal by any account of Leukemia treatment and how do you even start to explain that? It is like we have a big secret when we are out and about. Really makes me feel differently about the casual conversations people have.
We are not nornmal anymore I guess. Another thing that happens, I talk to someone I haven't talked to in awhile and they ask how Samuel is doing. How do you answer that? It is like, "hey, he is doing great.......today. But just a few weeks back he had another major surgery, like surgery #20 something...." "Oh, that is too bad." I was telling my friend Carrie about Samuel's last hospitalization and how he had anesthesia proceedures 3 times in less than a week. She did not get what I meant. I remembered her saying months ago, how uneasy and scared she felt when she took her little boy who was about 5 at the time, into the dentist for some dental work done under anesthesia. I reminded her of that, and then I think she understood. She could barely do that ONCE, and I just did it three times in a week. I think people see us, see him looking so good and think it is all over now, we can get back to normal, or we are normal. I guess it is best to just smile, and play the role. It is easier than trying to explain something to someone who will never get it anyway. I think my friend Carrie, who was here last week hit it on the head when we were talking about Samuel getting his gut hooked up. We will do the surgery assuming that the cancer is gone forever and we will NEVER have to do this all again. But we don't have that guarentee because only God knows if it is gone forever. While I 99% believe that Samuel is healed, there is always that little thought that creeps in here and there saying what if..... I just cannot imagine my life without that precious little boy. I cannot believe all we have been through in the past almost year and how much Samuel has overcome. It is just so hard to explain unless you have lived it, or been along for the ride as many good friends have. I want to be thrilled with others that he is doing so well now, but my joy is dampened a bit knowing that THIS is not over. I haven't really felt this way until just recently now that we have been about to get out a little. I think I realize just how much people take for granted and most are so busy that they never scratch the surface of another's life. When we go out to the zoo, or the park and enjoy the day like a child would, it just seems so surreal because last summer I truly thought we never would do those things again and now we are. I thought we would never enjoy life and now we are and maybe I am just afraid something will happen again and snatch it all away. The hospital is such a hopeless place to live. It was always so much easier to have hope when I went home even though I had to leave Samuel to do it. I wonder if I feel more hopeful that the chemo won't do any more harm to Samuel because we have been able to enjoy life again and feel normal. I mean, you could almost forget the cancer and all the problems we went through when you walk on the shoreline with Samuel who is busily quacking at the ducks. There were toys at the park but he preferred to visit with the ducks. That was pretty much heaven on earth for him. In that moment, you CAN forget. But then I walk into this house and I remember. I get into our SUV and I remember. Then I take him back to the poison clinic and hear a statement that I will say is a prophecy for Samuel, it has to be. It has to be God's way of getting us through and showing His miracles through Samuel to who better than his doctor? I think I need Monika to lay this all out for me so I know what the heck I am thinking/feeling here.....
One of my goals for this year is now to get OUT of this house. We have some things we need to do here to make the house saleable but we just need to move. I am tired of living in a place that reminds me of tragedy. Maybe we can just take the tub that Samuel and A.D. were born in and use it as a water tub for Bud, my horse. Other than that, goodbye! Move to a place big enough for us, and with land so we can get outside more. The sun surely does bring hope. At any rate, we ALL need to enjoy life more and get to doing the stuff we have been just talking about for years now. I am ready! I know this, I don't want to look back a few years from now and regret that we did not get motivated to follow our dreams, give our kids the best life we can, not just be satisfied with the status quo. It is time to make some GOOD memories!
Our thanks for your continued prayers for Samuel and us. We could not get through this without you all! Much love!
