Now that the nearly 5 year whirlwind has come to an end, we have set foot into all new territory. But first let me explain somethings that many people do not understand about leukemia and treatment. Lymphocytic leukemia has one of the longest treatments of all cancers. This has been determined over years of research and fine tweaking protocols that sadly are still being "tweaked" They have found that this longer regimine seems to work the best. They have tried ones that are longer and ones that are shorter but the ultimate goal is to find the one that gets rid of the cancer for good with the least amount of long term side effects. Donavynn got more than the average treatment due to his CNS relapse a mere 9 months away from completing his protocol that should have been 3.5 yrs long. In addition to this extra chemotherapy he also received cranial radiation. Many people have asked "Is he in remission" the answer to that is yes, and that we pray he will stay that way. When I explain that he has been in remission for years (bone marrow remission since 3/06, CNS remission since 9/08) they ask "then why is (now was) he still getting chemo?" That is due to the reasons listed above & below. Remission does NOT equal a cure and though they can not find cancer cells in his blood at that time does not mean that they aren't hiding somewhere... like we sadly learned in 2008 after a routine lumbar puncture revealed his relapse. So they treat longer to assure that they got all the cancer cells, because it only takes 1 to raise hell and eventually lead us back to a WBC count of 60,000.
The last month and a half have been relatively uneventful, which we are beyond thankful for. Boring is a blessing in this household. He has had an ear infection that has been very difficult to treat. His one tube fell out and w/i less then a month he had a raging ear infection. We have an appointment with ENT next month and are praying that they will put the tube back in when they remove his port a cath. That is another bit of news. After a recent trip to the ER and them once again causing him greats amount of pain because they were unable to access his port he informed me that he wants it out NOW! lol I then discussed with him the reasons we were keeping it in (monthly pentamadine [an antibiotic to prevent a potentially fatal form of pneumonia that strikes immunocompromised people] and IVIG for 6 months after completing treatment). After hearing about the possibility that they would be unable to start an IV for these infusions and that the port is just easier to access he has decided to keep it for a few more months to complete these meds but then he wants it out. I personally wanted him to keep it for a year, stats show that the first year off treatment is the most critical and I feel removing it any sooner is tempting fate, but I compromised with him on this and feel that after all he has been through he deserves a say where he can have one, after all I'm not the one being stabbed in the chest with a needle. So long story short, port will come out in about 4 months and hopefully the missing ear tube will be replaced at that time.
This months follow up appointment went pretty well, but I had much to discuss with his medical team. 1st and foremost being his recent report card. Going into this year he was ready. We had him tutored though out the summer and tested extensively prior to beginning this year in first grade. All signs pointed to him being ready. So after much discussion we decided to go ahead. His report card shows that he is struggling. His teacher states that he is having a hard time retaining information that he has learned and the possibility of him being dyslexic &/or dysgraphic has also been tossed around. Everyone involved at this time feels that it is a good time to do some testing to see if he has a learning disability.
"Statistics vary, but medical literature estimates that a third of all young
cancer survivors suffer from cognitive, social and emotional impairment due
to the lasting effects of a chronic illness and the debilitating treatment to
cure it. Patients under age 8 are affected more than their older counterparts."
http://www.taxtyranny.ca/images/HTML/Pharmacartel/Articles/Cancer/Articles/lingering.pdf
"Some types of chemotherapy, given either into a vein (intravenous, or IV chemo) or directly into the spinal column (intrathecal chemo), can also cause learning disabilities in children. These problems are more common if higher doses of certain chemotherapy drugs are used, and if the child is younger at the time of treatment. Learning disabilities are more common in children who get both chemo and radiation to the brain.
The learning problems, often called cognitive impairments, usually show up within a few years of treatment. They may be seen as: Lower IQ scores, which can vary depending on how intense the treatment is
Lower academic achievement test scores
Problems in memory and attention
Poor hand-eye coordination
Slowed development over time
Behavior problems"
http://www.cancer.org/Treatment/ChildrenandCancer/WhenYourChildHasCancer/childhood-cancer-late-effects-of-cancer-treatment
It breaks our hearts to see that he may have more complications to cope with. But honestly, of all the possible side effects of the treatment he has received, if this is his biggest problem we will be happy and feel very blessed! We are to meet with the child psychologist at his school in the beginning of next month to sign the papers after all the data has been gathered, and then the testing shall begin. I will keep you all posted on how that turns out. Part of me is simply praying that he is just lazy lol. I'd like for one of his problems to be a "normal" one but we shall tackle this together as we tackled the other obstacles he has had to overcome in his short 6 years.
Now on to a happier topic. We have finally got the ball rolling for his Make-A-Wish trip. We had debated over this long journey when would be the best time to do this and we waited for a few reasons one being that we wanted him to be old enough so that this wish is actually HIS wish and not something the rest of us think he would want, we felt it gave him something to look forward to when things weren't so pleasant and we wanted him to be old enough to remember all the fun he is going to have. The Make-A-Wish foundation contacted us last night to get some information and now they are waiting on his medical approval and then they will meet with him and go from there. We have presented him with many options for his wish and so far he seems set on wanting to take a Disney Cruise. Though, he is 6 and this could change at any moment. :) We will be discussing the best time to do this and then will set a more definite date, we were originally thinking November but this could change because we want the weather to be the best it could be...
So with all that we have in the works right now there is a lot going on, there is much to do and so much for me to keep everyone posted on. I will do so when ever I have any new information. For now I will close as this entry has become much longer than I intended. Please continue to pray for Donavynn's health as we all know that cancer an unpredictable little asshole.
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