Sunday, January 25, 2015
Watch Out Disney World!
January 12th
Tyler spent the day with Alice in clinic. Her counts were good and better than we anticipated. Hemoglobin was 11.5. Her liver function tests thankfully dropped drastically. They were outrageously high at our last clinic visit, we think it was due to the positive flu test she had. Viruses do crazy things to lab values. With that said we are keeping a watch on her liver.
Alice doesn't return to clinic until February. The doctors feel confident that she can go four weeks between visits. Hooray!
January 20th
Today Alice had a follow up with ophthalmology in Riverton. Alice has bits of cataracts in her eyes. She sometimes complains of cloudiness in her eye, thus the cataracts. We have been watching her eyes over the past few years. Thankfully it isn't too much worse than the last time we checked, but could still worsen over time. If so she will need surgery to fix it. Thankfully this is something that is very treatable and shouldn't impair her vision with treatment; steroids and other medications could be the culprit. Also she had some eye issues when she had the chicken pox spread into her right eye, which also might contribute to some of this.
WOW... there are plenty of extra issues that come along with chronic illness...SCID kids are famous for many side issues. Ironically much of this seems to be small stuff up against Chemo and Bone Marrow transplants, GVHD, etc. However, they are big issues still and need attention. We often wonder how skewed our perception of reality has become.
I will say there is nothing wrong with thinking and believing your life is peachier than what it may seem from the outside. Alice has been a great teacher of attitude, she has the best life anyone could ask for. She loves it all; although, the times she does complain are so little, but surely those circumstances naturally deny pleasure.
COMING SOON...Alice will fulfill her long awaited WISH. She and her family will be going to Disney World. It is going to be wonderful! We are ready for a great time and almost wish for it to not come, because then it will be over. But no worries, Tyler will have a great movie of it all and it will be cherished over the years. Stay tuned to see her wish in action.
Love you all,
Lisy
p.s. I will be honest, I have felt nervous to go to Disney World because I worry Evie or someone will get lost. I plan to put waterproof wrist bands on the little ones with my cell number written in black permanent marker. I am open to any other tips in this matter. :)
Thursday, January 8, 2015
Overdue Update
Another big gap between posts. I am finding it very difficult to remember everything when I post once a month. Unfortunately the reality and emotions get left out when I wait so long in between posts, for two reasons...I don't have time to be detailed, and I can't remember specifics. I am certain if I posted daily, this blog would show more of our true roller coaster feelings. You are getting the bare bones lately, I am so sorry.
My mind is a constant race track of information and thoughts regarding Alice (as always) to write it all down would be impossible. I can hardly get the thoughts and words out of my brain in regular conversation, so to post about it is a hefty task.
Here is the latest, from most recent back.
January 8, 2015
Ear tube cleaning for Natalie with ENT.
January 7, 2015
Natalie had a follow up with audiology for her hearing aid. It was mostly counter productive because she hasn't been able to wear her hearing aid much since she got it, due to her ear draining. We did discover her drain tube is clogged. Tomorrow we will see the ENT and have it cleaned out. Then we can benefit from the hearing aid again.
December 29, 2014
Good News!
Alice went to BMT clinic today and her counts were great. Hemoglobin was 11.2. This was a pivotal time for her, being two weeks post another blood transfusion. The fact that she held strong indicates that she is making more cells again on her own. Just in the past two weeks her Retic percent has improved. This is the percentage of new production of red blood cells. This number was not looking good in the recent past. Her Retic today was .77, and just on Dec. 5th it was .16. Normal range is from .50-1.50. Huge improvements.
So why has she been struggling lately. Still no definite answers...was it a virus we couldn't detect? Was it the first donor and the second donor fighting? Is it complications still from switching blood types? Who knows! Alice is improving, but still things don't seem right. She continues to puzzle everyone. However, we are extremely thankful to see that she is making red cells again.
By the way her recent chimerism was practically the same as the previous chimerism. Therefore, not providing a conclusive explanation on the donor 1 vs. donor 2 scenario.
Her liver function tests remain a concern. This will be addressed in our next clinic visit. She has random episodes of emesis (vomit), with no rhyme or reason.
Despite how this may all sound, Alice still thinks her world is fantastic and has no complaints. Everything is beautiful and lovely to her...and she makes our lives so full of goodness.
December 24th-31st, 2014
My oh my, what a hard week.
Tyler, Natalie and Isaiah had the flu (H3 Influenza A). I have never seen Tyler so sick, in fact on Sunday, Dec. the 28th Tyler asked me to take him to the ER, he was in terrible pain, coughing up blood. Breathing was a struggle for him. After a huge bag of IV fluids he perked up a bit. Tyler also had some pneumonia, a bad combo.
Natalie had a terrible time as well. We think she also had a sinus infection going on, or something. Her cheeks swelled so big and she started to have terrible pain and incredibly high fevers. She too spent a day in the ER...on Monday, Dec. (29th). She received a bag of IV fluid and it helped speed up her recovery. Natalie was very good to keep drinking, but IV fluids work wonders.
In fact while Natalie was in the ER at Primary's, Alice was upstairs at her BMT clinic visit...so we had to recruit Grandpa Fish's help.
In the end Tyler and Natalie got some antibiotics for their secondary infections and are doing MUCH better.
I felt so bad for Tyler, because I couldn't even take care of him...he was on his own. I wasn't keeping track of how much he was drinking. I was so busy controlling Natalie's fevers and symptoms etc. and keeping Isaiah hydrated and holding him non-stop. Poor little Isaiah couldn't sleep. We had to suction his little nose night after night and keep his fevers controlled.
Anyway, it wasn't our best week ever, but we are thankful it is over. Blair and Alice had minor symptoms. It's a huge blessing Alice didn't get more sick. I was praying that she would be protected. So thankful we are!
December 22, 2014
Bone Marrow clinic for Alice. Hemoglobin is 12.0. Still up from her transfusion on the 15th. We will see how long this transfusion will sustain her. However, with the good change in her Retic we should see these good counts last. Next week will say a lot.
December 15th, 2014
BMT clinic visit. Alice got another blood transfusion today. Her hemoglobin was 6.8. She was able to get her blood before the clinic closed. Also she made it back home in time to watch her cousin Addie's dance performance. She loved every minute of it.
Very good news. Her Retic count was high at 3.50. Yay! This means her body is producing red cells again. What a relief!!
To be more accurate, we don't know if in fact she wasn't producing red blood cells or if they just weren't leaving the marrow due to some process of destruction within the marrow...I suppose as long as her numbers look good and she is doing what we want, we won't go forward with a bone marrow biopsy...phew!
December 13th, 2014
As a family we were able to be a part of Delta Airlines' flight with Santa. It was a great time. Delta employees spent countless hours decorating the international terminal and plane. They totally cleaned a disinfected a 767 jet so the children could taxi around the airport as if they are going to the North Pole...upon exiting Santa was there to give them a gift and lunch was provided. It was a great time!
December 10th, 2014
Alice visits Endocrinology. What a valuable appointment this was for Alice. There was so much information given to me at this apt. I feel like I should have recorded the conversation with the doctor. Basically, after some blood work, it is evident that Alice no longer produces the hormone called 'growth hormone'....because of what she has been through with chemo and transplants.
Thus explains why she has stopped growing. Without treatment she will be 3 foot something full grown. If we treat her with growth hormone and she responds she will have the potential to be somewhere between 5'2" - 5'4" full grown, according to her genetics. Sadly the treatment is a daily injection with a needle until she is 17 years old or done growing. It's a big price to pay, but we feel will be worth it. The good news is that her bone scan indicates that her body thinks she is three and a half years old, which means it's hiding some growth and once she is given the supplemented hormone she can gain that much needed growth. We plan to start the growth hormone in the next few weeks. It will be a struggle for a while...I imagine at some point she will be able to do it on her own. Maybe in a long while.
December 8th and 9th, 2014
Natalie received her hearing aid December 8th. She was so excited. She said she could hear better. The audiologist will do a follow up hearing test in a month or so.
On December 9th Natalie's right ear...same ear with the hearing aid, started to drain. She hasn't been able to wear her hearing aid much at all because of the amount of drainage. It keeps clogging the hearing aid tube.
December 8th-- Alice's hemoglobin is 8.3. It's dropping again. We are worried that she might have developed HLH again.
EXTRAS
Blair called me from school and said he lost a tooth. I told him congratulations. He was a little worried and asked if the tooth fairy would still bring him something even if he didn't have the tooth. I asked why he didn't have the tooth, and he told me that he accidentally swallowed it while eating his school lunch. Opps!
Matthew lost a tooth two days later eating a carrot. He managed to not swallow his tooth, but had to see the dentist for a cavity. I think swallowing a tooth would be much better than having a cavity filled.
Alice lost a tooth this month too due to natural causes...but unfortunately she almost lost another tooth due to unnatural causes. We took the kids sledding. Alice and Evie were plowed over by another sledder. Poor girls were banged up. Alice's tooth was knocked loose (thankfully a baby tooth) her lip was gigantic. Evie came out of it with a terrible black eye. I asked them if they might still want to sled another day...they weren't keen on the idea. Later Tyler and I were mad at ourselves for even taking them in the first place. We thought it would be a fun family outing. Next time we will stick to the tiny hill in our backyard. Although Natalie, Matthew and Blair had a blast.
Video of Alice holding Isaiah
My mind is a constant race track of information and thoughts regarding Alice (as always) to write it all down would be impossible. I can hardly get the thoughts and words out of my brain in regular conversation, so to post about it is a hefty task.
Here is the latest, from most recent back.
January 8, 2015
Ear tube cleaning for Natalie with ENT.
January 7, 2015
Natalie had a follow up with audiology for her hearing aid. It was mostly counter productive because she hasn't been able to wear her hearing aid much since she got it, due to her ear draining. We did discover her drain tube is clogged. Tomorrow we will see the ENT and have it cleaned out. Then we can benefit from the hearing aid again.
December 29, 2014
Good News!
Alice went to BMT clinic today and her counts were great. Hemoglobin was 11.2. This was a pivotal time for her, being two weeks post another blood transfusion. The fact that she held strong indicates that she is making more cells again on her own. Just in the past two weeks her Retic percent has improved. This is the percentage of new production of red blood cells. This number was not looking good in the recent past. Her Retic today was .77, and just on Dec. 5th it was .16. Normal range is from .50-1.50. Huge improvements.
So why has she been struggling lately. Still no definite answers...was it a virus we couldn't detect? Was it the first donor and the second donor fighting? Is it complications still from switching blood types? Who knows! Alice is improving, but still things don't seem right. She continues to puzzle everyone. However, we are extremely thankful to see that she is making red cells again.
By the way her recent chimerism was practically the same as the previous chimerism. Therefore, not providing a conclusive explanation on the donor 1 vs. donor 2 scenario.
Her liver function tests remain a concern. This will be addressed in our next clinic visit. She has random episodes of emesis (vomit), with no rhyme or reason.
Despite how this may all sound, Alice still thinks her world is fantastic and has no complaints. Everything is beautiful and lovely to her...and she makes our lives so full of goodness.
December 24th-31st, 2014
My oh my, what a hard week.
Tyler, Natalie and Isaiah had the flu (H3 Influenza A). I have never seen Tyler so sick, in fact on Sunday, Dec. the 28th Tyler asked me to take him to the ER, he was in terrible pain, coughing up blood. Breathing was a struggle for him. After a huge bag of IV fluids he perked up a bit. Tyler also had some pneumonia, a bad combo.
Natalie had a terrible time as well. We think she also had a sinus infection going on, or something. Her cheeks swelled so big and she started to have terrible pain and incredibly high fevers. She too spent a day in the ER...on Monday, Dec. (29th). She received a bag of IV fluid and it helped speed up her recovery. Natalie was very good to keep drinking, but IV fluids work wonders.
 |
| Poor thing, exhausted with swollen cheeks. |
In the end Tyler and Natalie got some antibiotics for their secondary infections and are doing MUCH better.
I felt so bad for Tyler, because I couldn't even take care of him...he was on his own. I wasn't keeping track of how much he was drinking. I was so busy controlling Natalie's fevers and symptoms etc. and keeping Isaiah hydrated and holding him non-stop. Poor little Isaiah couldn't sleep. We had to suction his little nose night after night and keep his fevers controlled.
Anyway, it wasn't our best week ever, but we are thankful it is over. Blair and Alice had minor symptoms. It's a huge blessing Alice didn't get more sick. I was praying that she would be protected. So thankful we are!
 |
| Minor symptoms for Alice..believe it or not. |
December 22, 2014
Bone Marrow clinic for Alice. Hemoglobin is 12.0. Still up from her transfusion on the 15th. We will see how long this transfusion will sustain her. However, with the good change in her Retic we should see these good counts last. Next week will say a lot.
 |
| Gingerbread Temples |
December 15th, 2014
BMT clinic visit. Alice got another blood transfusion today. Her hemoglobin was 6.8. She was able to get her blood before the clinic closed. Also she made it back home in time to watch her cousin Addie's dance performance. She loved every minute of it.
Very good news. Her Retic count was high at 3.50. Yay! This means her body is producing red cells again. What a relief!!
To be more accurate, we don't know if in fact she wasn't producing red blood cells or if they just weren't leaving the marrow due to some process of destruction within the marrow...I suppose as long as her numbers look good and she is doing what we want, we won't go forward with a bone marrow biopsy...phew!
December 13th, 2014
As a family we were able to be a part of Delta Airlines' flight with Santa. It was a great time. Delta employees spent countless hours decorating the international terminal and plane. They totally cleaned a disinfected a 767 jet so the children could taxi around the airport as if they are going to the North Pole...upon exiting Santa was there to give them a gift and lunch was provided. It was a great time!
 |
 |
December 10th, 2014
Alice visits Endocrinology. What a valuable appointment this was for Alice. There was so much information given to me at this apt. I feel like I should have recorded the conversation with the doctor. Basically, after some blood work, it is evident that Alice no longer produces the hormone called 'growth hormone'....because of what she has been through with chemo and transplants.
Thus explains why she has stopped growing. Without treatment she will be 3 foot something full grown. If we treat her with growth hormone and she responds she will have the potential to be somewhere between 5'2" - 5'4" full grown, according to her genetics. Sadly the treatment is a daily injection with a needle until she is 17 years old or done growing. It's a big price to pay, but we feel will be worth it. The good news is that her bone scan indicates that her body thinks she is three and a half years old, which means it's hiding some growth and once she is given the supplemented hormone she can gain that much needed growth. We plan to start the growth hormone in the next few weeks. It will be a struggle for a while...I imagine at some point she will be able to do it on her own. Maybe in a long while.
December 8th and 9th, 2014
Natalie received her hearing aid December 8th. She was so excited. She said she could hear better. The audiologist will do a follow up hearing test in a month or so.
On December 9th Natalie's right ear...same ear with the hearing aid, started to drain. She hasn't been able to wear her hearing aid much at all because of the amount of drainage. It keeps clogging the hearing aid tube.
December 8th-- Alice's hemoglobin is 8.3. It's dropping again. We are worried that she might have developed HLH again.
EXTRAS
Blair called me from school and said he lost a tooth. I told him congratulations. He was a little worried and asked if the tooth fairy would still bring him something even if he didn't have the tooth. I asked why he didn't have the tooth, and he told me that he accidentally swallowed it while eating his school lunch. Opps!
Matthew lost a tooth two days later eating a carrot. He managed to not swallow his tooth, but had to see the dentist for a cavity. I think swallowing a tooth would be much better than having a cavity filled.
Alice lost a tooth this month too due to natural causes...but unfortunately she almost lost another tooth due to unnatural causes. We took the kids sledding. Alice and Evie were plowed over by another sledder. Poor girls were banged up. Alice's tooth was knocked loose (thankfully a baby tooth) her lip was gigantic. Evie came out of it with a terrible black eye. I asked them if they might still want to sled another day...they weren't keen on the idea. Later Tyler and I were mad at ourselves for even taking them in the first place. We thought it would be a fun family outing. Next time we will stick to the tiny hill in our backyard. Although Natalie, Matthew and Blair had a blast.
 |
| From Natalie...someday?? |
Video of Alice holding Isaiah
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