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 weddin
