Wednesday, October 27, 2010
Friday, October 22, 2010
Hi all,
I have been getting several calls lately for updates on Mary. She will probably be going in for her transplant on October 29, although that is not the confirmed date. We will know first part of next week what the exact date is but it will be around that time. There have been some hold ups as far as insurance and getting the donor cells transported here. Mary has had a very heavy schedule since she was released from the Hospital. She had to have blood work done every other day for the first 2 weeks and a weekly appointment with the Oncologist. Once her blood started to respond on its own she only had to have blood work done once a week. The testing for the transplant is very thorough. This is to establish a health baseline in case there are complications from the treatment. Of course I have still had to work so generally she has been coming to work with me on the days she has appointments/labs and she either sleeps under my desk or plays on the computer.
This is what she wrote to T about the testing: “I have like fifty flippin’ tests they want to do. Just on Wednesday I had to go to the gynecology lady (and that was just AWKWARD, but kind of funny, the first thing she said to me after was that I was without a doubt a virgin…go me!), then a bone biopsy, then a spinal tap (just so you know, when your wife has to have a needle JABBED into her spine, when giving birth, be sensitive to the fact that it will HURT and they somehow will want her to breath in DEEPLY while SUCKING in her stomach….doesn’t make much sense does it? But if you don’t you will be paralyzed for the rest of your mortal existence – SO DO IT!!!), then an echo, then an x-ray and by the time the day was over I was a sobbing shell of a human being. I spent the next two days sleeping.”
A live donor match was not found in this round of testing so instead of doing another round of live testing (which would take another 2-3 months) it was determined that a double cord transplant would be the best course of action. This eliminates the need for a secondary chemo treatment before the transplant. I have provided a link below to explain in more detail what a cord transplant is for anyone that would like to know more but the short explanation is when a child is born there is blood in the umbilical cord that can be stored in a Cord Blood Bank and they are called Cord Blood Units (CBU). That blood is very rich in stem cells and the stem cells are used to do the transplant. Because it has already been typed and tested it can be used immediately. A double cord transplant uses the cells from 2 different cords or CBU’s. This speeds up that graft time which, unfortunately, is generally slower than a marrow to marrow donation. The upside is there are fewer significant complications due to Graft vs. Host disease. (This may also be of interest to those of you who have been curious as to the how/why/where etc… of stem cell research) They have only been doing cord blood transplants at the University of Utah Hospital for about 5 years but the research goes back 20+/- years.
Mary is well. Her back and tail bone hurt from all the testing and medication that she has been on. Since the spinal tap she has been experiencing headaches on a regular basis. But she is down to one pill a day (and pain meds) vs. the 8 medications that she came home on. She has no trouble going out in public bald and is actually having some hair growth, about ¼ inch. It has been difficult for her to have her peers, meaning those in her age group, snicker and point but she gets past it and moves on. It has been interesting to be with her out in public and notice the reaction she gets from her fellow human beings. It is definitely something everyone should experience at least once in a life time. Her friends and cousins have been super awesome (probably not good grammar but…) supporting her through this experience and it has been a time of great spiritual growth for all around her, especially the youth. One nice thing is she had to have her braces removed since she cannot have them during the transplant. I can’t believe how good her teeth look. It was definitely worth the cost in her case. With T it was not so obvious.
Her blood count has been up enough to go to church the last couple of weeks and it has been both good and bad. She loves being there but has a difficult time sitting for 3 hours due to the pain.
We will be having a change of venu for the Holiday’s which means we will need to be creative so if any of you have some good (bacteria/mold free, non-exerting) idea’s let me know. I am not sure what the Hospital will allow but fresh ideas are always good. (Outside food will be extremely limited, but the chance she will be on meal-in-a-bag for Thanksgiving is very possible anyway.) We have been told to plan on her being an inmate for about 2 months. We will be handing out glow bracelets to the trick-or-treaters. LOL - Fresh from the radiation chamber – HA…HA…HA…
For the first month, she will be suffering the effects from the chemo/radiation as well as being on immunosuppressant’s, so the short of it is she will not be feeling like entertaining company and will be very susceptible to illness. I am not saying not to visit, but be aware that she might look and feel like death’s leftovers and do not to be surprised if she acts that way to. The room has a 3-4 person capacity so that the filtration system can function properly. I am not sure what restrictions the Hospital will be implementing for the fall/winter season. Last year they restricted children entering the hospital because of the Flu concerns. Just things to keep in mind when planning to visit.
Makaela Ray, T’s friend, and her mother Jody Ray are putting together a fundraiser. It will be a Murder Mystery Dinner. It will potentially be the week of November 15th. I cannot thank her enough for her help with this. More information will follow. We will also be opening a donation account at Zion’s Bank in Mary’s name for anyone that would like to assist with the medical cost.
This is a schedule of what has been happening and what will be happening for the next few weeks:
Blood work M/W/F 9/20-10/1
Dr Appt on Wednesdays 9/22 & 9/29
Braces removed and teeth cleaned can’t remember which day that was.
Monday, October 4, 2010
· BMT nutrition training
· BMT Pre/post treatment training
· BMT unit tour
Wednesday, October 6, 2010
· Blood Work
· Financial Counseling
Wednesday, October 13, 2010
· OB/GYN
· Labs & EKG
o They took 16 vials of blood – it took 1 ½ hours to get it all done. They check for everything, Liver/kidney function, and viral/bacterial strains lurking, urine/bowel testing, the list is extensive.
· Oncology – make sure all is proceeding well and she is feeling ok.
· Bone Marrow Biopsy/Lumbar Puncture
o This took another 2 hours because after each test you need to stay still for at least a half an hour to ensure you will not bleed, or leak out depending on the test. They also did a chemo treatment directly into the spinal cord since leukemia cells like to hide in the spinal fluid.
· Chest X-ray
o To check for any obstructions or abnormalities in the chest area
Thursday, October 14, 2010
· Pulmonary Function Test
o Breath in and out and a machine measures your lung capacity and functionality
· ECHO
o An ultrasound of the heart to make sure all the valves are flipping and the chambers are contracting properly, as well as the heart lining is sufficiently thick with no holes.
Tuesday, October 19, 2010
· Radiation/Oncology Consult
o This was a consult to discuss the treatment, side effects, answer questions and get consent.
· Measurement & Planning
o The lungs are particularly sensitive to radiation treatment so they actually design a shield based on digital imaging to fit Mary’s body (lung size) exactly, that she will use each time she has the radiology treatments. Each treatment is based on height, weight, age and of course the medical condition.
Friday, October 22, 2010
· Dentist – she will not be able to have any dental work done after the transplant for possibly a year so all dental work has to be completed prior to the transplant.
Tuesday, October 26, 2010
· History & Physical
· Line Placement (Same Day Surgery)
o This is to insert a Hickman Central Line. The Hickman she had for the chemo became infected so it had to be removed and replaced with a PICC line in her arm. Unfortunately the first PICC line developed a clot so a second PICC line was placed. Due to the problems she had with her lines it was determined that they would remove them all during her release and let her body rest. Unfortunately that meant that she has had to be poked for all her lab work.
· *****Sip water w/meds in AM 4 Hours prior, ok*No Eating 8 Hours Prior*RIDE HOME*****
Thursday, October 28, 2010
· BMT Consent Conference
Friday, October 29, 2010
Potential Admit Day (day -8)
Day Therapy
Day -8 Fludarabine IV 25 mg/m2
Day -7 Fludarabine IV 25 mg/m2
Cyclophosphamide 60 mg/kg
Day -6 Fludarabine IV 25 mg/m2
Cyclophosphamide IV 60 mg/kg
Day -5 TBI 165 cGy BID
Day -4 TBI 165 cGy BID
Day -3 TBI 165 cGy BID
MMF 15 mg/kg BID start
Day -2 TBI 165 cGy BID
Day -1 rest (in other words - PARTY/ watch Mary pay homage to the porcelain/plastic God)
Day 0 both cord blood units infused – Watch/wait for the graft to happen and Mary to recover
Fludarabine and Cyclophosphamide are both Chemo medications
MMF (Mycophenolate mofetil) - Cyclosporine A will be initiated at day -3 and continued until day 180, an immunosuppressant drug used to preventrejection in organ transplantation
TBI (Total Body Irradiation) - Patients will receive TBI given on Day -5 through Day -2, using a linear accelerator with lung shielding as per radiation oncology standards (meaning - 15 minutes of radiation on each side, front/back, twice a day, at least 6 hours apart), a form of radiotherapy used primarily as part of the preparative regimen for haematopoietic stem cell (or bone marrow) transplantation
Many have asked how I am doing and the truth is I am a bit overwhelmed right now. I do not look forward to seeing my daughter at deaths door and the waiting period for it to begin is something I would rather not be going through right now, or ever for that matter. With that said, I could not have asked for any better situation than where I am right now to deal with this. I do not have to worry about a house and all the responsibilities that go with that thanks to living with my parents. Work is extremely flexible with my schedule and my boss has been outstanding at being reasonable with regards to my responsibilities. T is serving a mission so other than emails I do not have to try to juggle time with him. T’s mission mom used to be a social worker at a couple of the local hospitals so she has been able to help answer all his questions. We have so much support from family, friends and neighbors that everything else just falls into place without me even having to worry about it. So other than being a bit emotional I am functional, nominally. Mary and I have a relationship that is very unusual for a teenager and mother to have and I am very grateful that we were able to develop that before this all happened, it has become even stronger through this experience. I have had to start relying on others to help me when I just can’t do something and that has been very difficult for me but a blessing all the same. My relationship with my Father in Heaven and Jesus Christ has also become much more important to me than it was before (not that it wasn’t important before, but with each test it becomes stronger) and my testimony of their love has increased.
Thank you all for your love and support through these trying times. We could not have come this far without all of your prayers.
Love always,
Deb
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